Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: Cal on August 22, 2015, 09:42:42 pm
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Hi all,
I am in Brisbane Australia and started compassionate access Veikira Pak and Ribas for 12 weeks. I am on Day 3. I am a previous non responder after having a bad reaction to Ifn on a trial which put me in a Psych unit with agitation. So I am a little anxious about what this tx will bring, so am asking kindly for your support on this journey.
I have some weakness and breathlessness already but was advised by Phoenix and Philadelphia on another thread that this is typical. So I am pushing forward and hoping that the next few weeks will see a calm down of some of the symptoms, if not, never mind. :)
I am resolute to slay this dragon this time. Looking forward to getting to know you and your wisdom's and kind words. Thanks. Cal
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AUSTRALIANS ARE TAKING OVER THE FORUM ONE VIEKIRAN AT A TIME!! ;)
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I'll see Your Viekira & raise You a half a dozen Harvonis there little lady.LOL. BTW , how the heck are You going to Take over something that is allready Yours?? HA HA HA!!!
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Just out of curiosity, how old are you Cal? I'm 56 and often wonder whether tiredness and the like isn't just part of getting older.
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Hi Philadelphia,
I just turned 59 ::) did you get the tiredness too? Mines a weakness where I have to sit or lay down. Cal
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Welcome Cal,
I am another Viekiran (with riba) and just finished treatment on 8/2/15. EOT bloodwork still shows virus undetected (had been since week 4). Praying for week 12 results to be the same.
About side effects, all I can say is wow - acid stomach, emotional ups and downs, crying for no reason, sleepless nights, etc. But remember, everyone is different and docs can prescribe an anti depressent temporarily if you feel you need it. Towards the end of treatment my skin felt like I had little tiny bugs walking up and down my arms and all through treatment I had a horrible dry cough - sometimes felt like my throat was closing and I could not speak because I was coughing so badly.
Always carried water and a large supply of Ricola berry cough drops. :-)
Twenty days post treatment and I am sleeping much better, have acid once in awhile at night, and still coughing, but less and less. I did become slightly anemic and so energy level is out of whack - takes time to get moving in the morning and I get tired earlier in the day. (This too seems to be improving slightly.) All in all, side effects were manageable (although my husband might disagree!).
Would do it again in a heartbeat to be rid of this HCV.
Saw doc last Monday and said to give myself another 2 weeks and I should see a drop in side effects. Will do blood beginning of September and again beginning of November.
ONE VERY IMPORTANT NOTE: I discussed self-reinfection with doc because it was brought up in forums. As soon as I was undetected, I ran to dollar store and bought diposable razors and toothbrushes. Virus can live outside the body. Doc told me that since I brought it up he is telling all new patients to switch out things that can reinfect as soon as they become undetected.
Good luck Cal! Hope to see you on the flipside!
Prudence
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Hi Prudence,
Thank you for the warm welcome. Wow you made it through tx! Well done. It sounds like you had it a little rough. Post tx sounds promising, I had been wondering about that. I went to the chemist today and got antihistamines and indigestion meds. Experiencing both already on Day 4.
I can't take anti depressants as I have Serotonin Syndrome, so I just have to suck it up and swallow some concrete. I'll check you're thread to see if you txed with ifn before etc. It's very different to that thank goodness.
Thanks for the tip on reinfection/ I had not heard of this before. So you can still reinfect yourself if you are UND? Interesting.
I am sure we shall have a few more conversations! Thanks for your good wishes. Cal
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Day 4. I went out today, sticking to my routine as Philadelphia advised. I was glad I did, even though I had to find a comfy chair in the Department Store! Bit less energy there :D
No terrible sxs today so far, palpitations once, no breathlessness, but need a rest now (it's afternoon here).
I'm also having those ribas 12 hours apart now. I wasn't doing that before.
Feeling waterlogged though! Cal
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If you find the ribavirin affecting your sleep you can take them earlier (so said my nurse practitioner at St Vincents).
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Hi Philadelphia,
Is it okay to have the ribas less than 12 hours apart then? This is what I was doing before. 7.30am and 6.30pm. Cal
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Hi Prudence,
I can't find your thread. I was going to read it. Cal :)
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I was told to keep the pink and beige ones 12 hrs apart but I could move the riba if I had trouble sleeping.
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Hi Philadelphia,
That makes sense. Thanks.
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Hi Prudence,
I can't find your thread. I was going to read it. Cal :)
Hi Cal,
I'm not writing too much now as I am in the waiting game. I post some on completed treatment forums with Sapphire. I come back to the on treatment forums because I feel that if I can answer questions or give support to newbies on this journey I should do that. I had Philadelphia, Sapphire, Kimintheforest and others helping me with information and support, for which I am eternally grateful.
Realize that the chances of reinfecting yourself are very small, however I was not willing to take the chance. Since theoretically the virus from your own blood can live on your own razor / toothbrush., it is possible to reinfect yorself.
I contracted HCV in the early 1970's and was diagnosed as non A/non B. I am 64 years old ( got you and Philadelphia beat!) I was very lucky to progress slowly with this disease and since 1998 I have progressed from grade 0 to 1 to 2. Interestingly, my doc, who is into research on hvc and was involved in the research for this treatment, tells me that the disease seems to progress faster as we age and that when infected at an early age, men seem to progress faster than women.
I was treatment naieve because I was lucky enough to be able to wait for these new treatments.
I have also been told to eat at least 3 egg whites a week (or eggs), as the albumin in the egg whites seems to help with cell regeneration.
There are other threads here talking about foods to eat and the impotance of antioxidents.
I have been posting all over this forum, but don't think I ever stared a thread.
I have been posting my journey on blogspot.com - curing my hep c with viekira pak and ribavirin - if you have any interest you can read it there.
All the best, Prudence
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Hi Prudence,
I can't find your thread. I was going to read it. Cal :)
By the way Cal, you can click on any member's name and then click on posts to see everything they have posted on these forums.
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Hi Prudence,
I will try to check out your blog. I was dx with non A non B at first and told go away prognosis good, it's like Hep A. I went away and was hit with severe fatigue and told when trying to get pregnant and having various blood tests that I had hep C. I was told not to have children, to adopt and have protected sex with my new husband. (I have 2 beautiful uninflected sons) I had a nervous breakdown. That's interesting about the research. I am unsure what my fibrosis score is yet. I have a fibroscan in a couple of weeks. I don't have cirrhosis though. You were lucky to be tx naive. I bitterly regret txing with ifn it ruined my life and my family's.
Thanks for the tip of clicking on members names, much appreciated.
I hope SVR is round the corner for you. Goodness knows we all deserve it and have earned it. Cal :)
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Hi all,
I was wondering about pain killers. I was on morph for a year and gave it up to wait for Veikira Pak. I now take Ibuprofen. Is this ok? I didn't ask the Doctor. I forgot. Cal
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Hi Prudence,
I couldn't find you under D or P in blog spot.com? Cal
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Day 5. I forgot to put that in just for the record. 8)
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https://www.google.com/url?sa=t&source=web&rct=j&url=http://curinghepc.blogspot.com/&ved=0CCsQFjABOBRqFQoTCLenp-X3w8cCFcp-kgod3AIHXw&usg=AFQjCNGyenn5BlVOR4FMi6AHE51y2LBA9A.
Hi Cal, this is the link for blog. Or try curinghepc.blogspot.com/ . If you Google curing my hep c with viekira pak and ribavirin, the blog usually shows up about 3 pages in. We were all so naieve about what this disease was and how it could be passed on. Thankfully that is over!
FYI - my doc always told me Tylenol and not to overdo it.
Prudence
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Oh thanks Prudence,
I'll have a peek at your blog. Also what is in Tylenol? In Oz we only have paracetamol and ibuprofen? Cal :)
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I think you'll find Tylenol is Panadol. It's recommended that people with cirrhosis take Tylenol/Panadol only to reduce risk of internal bleeding.
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Hi Philadelphia,
I don't have cirrhosis, can I take ibuprofen? I was on morph before and stopped it to go on these drugs? Cal
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Sorry, I thought you had cirrhosis - usually that's what it takes to get compassionate access. If you don't, ibuprofen is fine from memory. There's an old thread about it here somewhere.
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Thanks Philadelphia,
That's a relief. No I got compassionate access because of co morbidities. I'm very ill, but determined to grab back some health. My Professors believe some of my illnesses will be helped by tx. Cal
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Cal, I had both my children without knowing I had hep C. One beforehand (I haemorrhaged and was given blood transfusion, most likely source of infection) and one after. Neither have the virus. One is a regular blood donor so her blood is checked all the time, the other has had a test.
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Hi Philapdelphia,
It's such a relief to know the kids are clear. Mine are too, I had them tested. I had them knowing I had Hep C, but my Professor said there was such a low chance of transmission to go ahead. I am sooo glad I took his advice. Eldest son is in counselling because of how ill I am. He is terrified of me dying. He has ridden in the Ambulance with me a number of times! My husband isn't particularly supportive. I have to svr for my boys. Cal
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Hi Cal,
Welcome, nice to have another vike on site. So many harvons on this site. Even the ads are all harvoni... lol.
I had all the typical vike/riba sides. 2nd and 3rd week were the worse , but do-able and I went to work each day. After 3rd week, every day got better. Still have stupid riba cough that comes and goes. Some times I can't even tell I am on tx.
Everyday is better. 5 and 1/2 week to go.
dm
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Hi drummer man,
Day 6. Ooo oh 2 nd and 3 rd weeks worse. Yuk! Something to look forward to 8) are you doing 12 or 24 weeks? You're on the home stretch. I'll check out your thread fellow vike :) cal
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Hey Cal, I was reading your posts earlier and I felt the need to comment on your husband not being very supportive. I had the same thing here. I had NO support, he didn't understand the daily pain I was in for years...and never went to a single doctors appt. with me. Some days I would literally crawl to the coffee pot because my joints hurt so bad. The difference you and I have was that I decided not to tell my children the entirety of my illness, because I didn't want any stress to influence their childhood, because of worry for me. I just told them I was getting old and had bad arthritis ..and left it at that. I still had a 17 and 7 yr old at home and chalked his lack of concern for me to be bone chilling. It literally ate my heart to the core on a daily basis. One day about 9 months ago I couldn't straighten my knees or my elbows ...he sluffed it off as usual...I looked at him and said ya know what Tony...I would rather be alone and be lonely than to be married and be lonely.....and I did it....I told him to go find a new place to live. Financially I am hurting a bit but my children are much happier because I am not angry every day. I got motivated to get myself treatment and decided that surely some day I will meet a man who truly cares and supports me no matter what. I guess some people just can't understand what this dreadful disease does to your body, and added stress from the lack of support I think made it much worse. For me anyway. I thought I was the only one who's husband just didn't care or understand what was going on... We have 5 kids...but enough is enough. Mentally I am sooooo much happier...and I think it helps with the treatment to not have the stress. I have 7 weeks of treatment left..I feel great physically and emotionally and this woman is taking the world by the balls!
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Good for you, Scoutdoy!! What an empowering story! Took a lot of courage to do what you did. But each act of courage makes us stronger still.
Right on,
kim
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Hi Scoutdoy,
Thank you for sharing that with me. It is very lonely. The reason I txed in 2011 was to leave him, but I became disabled by the tx and that plan was ruined. I planned not to tell my kids but 6 months ago I couldn't hide it from my 21 yo any longer. He asked me and I couldn't lie. He went on to write something about hep c and it's impact on the family and his mum which was published and presented to parliament with other stories in hope if getting the orals approved here in Oz. He was also part if a huge petition which was also presented. I am very proud of him. However, it is stressful for him and his younger brother 17 yo. The youngest looked at my Viekira Pak drugs and said these are anti virals, what's gong on? I told him they were experimenting with the drugs on my Primary Aldosteronism. But I think he is starting to think hard. I don't know how much longer I can lie to him. But I have to, as he has an anxiety disorder from Autism as a child. He would think he could get it off me and it would be awful for him.
If I had a supportive husband these burdens would be shared. Ho hum. I am glad you were able to get out. Good on you. It's financial and being so ill that stops me now. I have lost a lot of confidence. Cal
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Hi all viekerians,
I have been told that my SVR success rate is 80_90% now! because I previously was a non responder on NS5a drug Ledispavir. My GP showed me a letter from my specialist. I have had a blood test for resistance, but the test results take some time.
But stunned, but trying to focus on rates which are still good. Has anyone else come across resistance issues from trial drugs. Has anyone else txed twice with a trial drug?
Dazed Cal
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Hi Cal
There is a forum member named pappy that failed a short course (8 wks) Harvoni therapy and is retreating on Viekira-Pak 24wks w/Riba. He is about halfway through treatment but he has not posted in quite some time. Hopefully he will post his progress soon.
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Hi all viekerians,
I have been told that my SVR success rate is 80_90% now! because I previously was a non responder on NS5a drug Ledispavir. My GP showed me a letter from my specialist. I have had a blood test for resistance, but the test results take some time.
But stunned, but trying to focus on rates which are still good. Has anyone else come across resistance issues from trial drugs. Has anyone else txed twice with a trial drug?
Hi Cal. The issue of resistance developing to the first generation NS5A inhibitors (ledipasvir, daclatasvir, etc.) is being discussed more and more now. Here is a 2014 paper on it:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961994/
It appears that the second generation NS5A inhibitors now in development (GS-5816, etc.) have improved but not totally escaped the problem of resistance.
It seems to me that just because you didn't respond to (or get cured by) ledipasvir in a trial, that does not necessarily mean your HCV has developed resistance to NS5A inhibitors (although it is possible). There could be other reasons why a trial drug doesn't work on a person. Was the ledipasvir combined with sofosbuvir (Sovaldi) in your trial? Because that combo is Harvoni. And did you receive that combo for 12 weeks?
I think it is good that you are being tested for resistance to NS5A inhibitor. Stay hopeful and positive while waiting for the test results. The news may not be bad. Your current treatment could still quite possibly work for you. And even if it doesn't, so much is in the pipeline right now, that problems of resistance will be solved along with everything else.
Good luck!
kim
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Hi Bad Bradley,
Harvoni is sophos a polymerase and Ledispavir the NS5a. I only had the Ledispavir with another numbered but discarded PI.
My Doc isn't concerned about the PI just the NS5a. But if Pappy is on it after failing Harvoni, it'll be interesting to see his posts. Thanks. Cal
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Hi Kim,
Thanks for all that info. I responded really well in the trial UND at 2 weeks but, I developed issues with the ifn which made me stop at 11?weeks. Nothing to do with not responding. You're right I may not have resistance, but if I have then I still have a good chance at SVR.
I've seen others on viekira pak after Harvoni doing well, so it's just a Russian roulette, which other txs in the past have been.
Thanks for such a positive and uplifting response Kim. Cal
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Day 10. Feeling ok. Cal
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Good for you cal
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Thanks Scoutboy. Hope ur ok. Cal
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Hi all,
Am having a lot of liver pain today and tonight. I used to have it say once a fortnight/week before. I like to think it's the drugs kicking virus ass! Any experiences, thoughts? Cal
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For Cal, hi i'm Italian and take info on this forum, very important for me because in Italy haven't info in the forum like this.
In Australia are there the private healt insurance like USA or the state healt care give the therapy for the Austrialian?
For the side effects, I'm on Harvoni only treatment, and start a week ago, have a strong headaches, but from the 4 days. Hope the body , like your, stay to fight the hole of the virus!!!
Stay strong stay cazzuto! Bye
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Hi Lou,
We have both here in Oz. Private and public. I see my Gastro privately which means I pay, but the drugs were on Compassionate grounds so through the Government and AbbVie so I don't pay for the drugs. None of the orals are available in Australia. You can only get them through compassionate access or on a clinical trial. I have a lot of friends who are thinking if going overseas to buy the generics from India. It's really bad here. I have very sick and dying friends, not everyone is given compassionate access. Without getting political we have a Government who just won't let the drugs become available.
Good luck with the Harvoni. I had headaches to begin with too, they get better. You're doing well. Cal
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Cal this may seem a little strange but I swear the first couple of weeks I felt like my liver would twitch every once in a while. I kind of thought I just moved in a weird way but it happened several times the first couple of weeks. It hasn't happened since then though. It didn't hurt, just kind of strange.
Scout
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Hi Scout,
It's odd isn't it? The pain has been all over too not just the usual place. So maybe it is drugs kicking ass? Cal
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I think you may be right Cal. Although my 4 week lab still showed that I was detected, my viral load went from 13.9 million to >12. That's like over 400,000 a day decline. I can't be too upset about that.
Scout
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Scoutdoy & Cal, I'm with You guys on this, Major war going on inside. Some days even My hair seems to hurt. I started getting the LIVER QUIVERS ( for lack of a better term ) week four. No pain but it startles the crap out of Me when it happens!
Fight the good fight everyone. Let us beat the virus into submission and enjoy life once again.
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Fight the good fight everyone. Let us beat the virus into submission and enjoy life once again.
Such great advice, Tommy! May we all get there. :)
kim
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Tommy, were you undetected in August when you had your labs done?
Scout
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Scout, Lab lost some of the results , part of which were the viral load. Last time I checked back with the Dr.s' office still no more info. I really liked the other numbers that came up once I got a chance to digest them. I have not in My memory had a panel that looked like that. Something is cooking inside Me and I like the smell so far!
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Hi Scout, I have a high viral load as well so maybe it's working extra hard! Your drop at 4 weeks is something I would aspire to. Good on you. Cal :)
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Hi Scout,
I have a high viral load as well, so maybe it's just working extra hard! Your week 4 drop s amazing something I aspire to. Good on you! Cal
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Sorry Scout I didn't think the last one posted.
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Hi Slats,
I like that "Liver Quiver". I think I'll use that 8) Cal
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Hi Cal, Use it ? Hell You can have it, scares the crap out of Me when it comes from out of no where very unexpectedly!!! Hope all is well down under in Aussie land. I know we are worlds apart , but I think it's cool chatting with You & Philly Girl, OOPS I mean Phil-O!!!! LOL!!!! Couldn't be more different than kangaroos and armadillos.
Just curious if anyone has noticed a correlation between the side effects of the different treatments compared to the length of time one has had the virus or level of damage to the liver?
I have just started the halfway point of twelve weeks of Harvoni tx, Thank God the sides have dialed back quite a bit! Apparently I am on the two to three percentile team that has pretty bad sides. Oh well , I have put Myself though worse in search of a good time in the past,
Cheers to You Guys and all the Hep Warriors down under, keep kicking Hep butt & taking names.
THE PATH TO SVR IS A SUCKEE ONE , BUT ACHIEVING IT WILL BE SUBLIME!!!!
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Hi all,
Am having a lot of liver pain today and tonight. I used to have it say once a fortnight/week before. I like to think it's the drugs kicking virus ass! Any experiences, thoughts? Cal
Hi Cal,
yes, I had these "liver quivers" too (I like that description). I, too, had these before treatment and kicking in like crazy in the first few weeks of treatment. I visualized little VP and Riba warriors penetrating the HCV and kicking butt!
They calmed down after awhile and have only had them once post treatment. Hoping it is just my liver healing and cleansing.
Prudence
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Happy September 1st everyone, here is to a new month of recovery for us all!! I just received the actual lab numbers from the tests done last week. I don't know if the nurse who called me was reading my labs or someone elses, because the one in my hand shows I am going anemic ,,,and under Hep C RNA, PCR Quant it reads <12 (negative IU/mL) ....can anyone tell me what that means? Does that mean it's there or not there? Damm, I knew I should have paid more attention in Anatomy class in college..LOL
Scout
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Hi Tommy,
Thanks very generous of you lol!
I see no correlation between sxs and length of time you've had HCV. I've had it for 35 years and so far sxs are manageable. Sounds like you've had a hard time poor thing. This HCV is so unfair.
Yep alls good here in Oz,mexcept our D, head prime minister. ;) won't let these drugs through.
BUT spring is here and it's warming up. Are you in warm place? The cold really messes with my temperature problems of sweats etc.
I agree the path is sucked for sure. Cal :)
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Hi Prudence,
I am putting the liver pain down to virus kicking butt too! Cal
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Hi Scout
Sounds like you're UND to me Scout. When do you see your Doc again? You need to address the anaemia. Cal
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It's spring, the fruit trees are growing, things are warming up and I have five days left. 163 down, 5 to go.
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Hi Philadelphia,
You are the bomb 8) Cal
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Hey Cal, Well I at least hope the V-pac Meds are being good to You. I am hoping that the bad sxs are because My little Harvoni army is kicking butt. Yea , I guess You could say it's warm here , mostly in the mid to high nineties. A week or so back it was 100-105 for a week & a half. Went to the Docs' to pick up My last four week Rx. , also told the nurse to make sure that the Lab had the directive to make sure all the tests came back in full , especially the viral load that got lost last time.
Hi to You to Philadelphia, Man that is good news , the finish line is coming up and the winners circle is in sight! I just completed week seven , five more to go for Me. October 6 I believe, it looks like I'll have to wait until the New Year to get My twelve month EOT results back.
Had a most excellent freaking day today! First day in seven weeks that there were NO SIDES except a little fatigue. The old pea brain was clear as a bell. Even though it was a bad day at work it didn't bother Me at all. Wish You all a beautiful spring in the land of Oz!!
WE ARE BUT PAWNS IN THE LARGER SCHEME OF LIFE , HOWEVER THE LOWLY PAWN HAS THE ABILITY OF KICKING THE KINGS BUTT PROVIDING HE PLAYS THE GAME WISELY AND NEVER GIVES UP!
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Scout , Looks undetected to Me. I guess this Hep Crap just won't let You enjoy success without a little dying kick at Your shin one last time. At least the anemia is addressed easier than the Dragon. Happy for You!!!! Good Luck , best wishes , and happy September first to You,
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Great news for you Philadelphia...your soooo close to the finish line!! I bet your very excited. I have to say that the anemia I am experiencing is probably self induced. I haven't been eating very well the last few weeks, I just really haven't had an appetite. That's unusual, because I am normally a pretty big eater. I know better than to not eat regularly, I just let it slip, I am going to make a better effort to eat more and see if that helps out. I am getting my yearly physical next week and I am sure this doctor will run labs. Cal, it's 95 degrees and very humid where I live, it's been brutal. I am very ready for fall.
Scout
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Hi Tommy,
That's hot baby! We get temps like that here too. Crank up the air con. I am having a few sxs fron the Viekira pak drugs. I get a bit of anxiety now. Hoping that passes too. Sorry you had such a hard time, but I put it down to kicking butt too :) as long as you can get those test results in your hot little hands! I think you'll do really well. It must have seemed unreal to have no sxs and a clear mind after 7 weeks, wow that's doing it tough. Cal
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Hi Scout,
That is hot, I don't know if you're on ribas too, but stay out if the sun and moisturise. You must eat properly. I make smoothies with kale, carrot, celery, apple whatever, they are great when you can't be bothered or don't want to be eating. Cal
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Thank goodness I am not on ribas...just harvoni. I shouldn't bitch I have really had minimal side effects other than a couple of headaches and this little anemia thing going on. Ate a bunch of spinach today and I am grilling a big fat T bone steak tonight. That should boost the iron up a bit....might clog the old arteries but what the hell...LOL
Scout
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HI Scout,
You've probably already been told this, drink lots of water. Flush out the toxins. These drugs can dry us out too.Glad you're not on Ribas, they ain't no picnic! Cal
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Hi all,
I got my 2 weeks results and I am dehydrated and have to drink 3 litres a day. Yuk! I am struggling but I have to have an ultra sound of the kidneys and bladder just to be sure. But I haven't been drinking enough water. HOWEVER, I got my LFTs. No VL yet still waiting for it.
LFTS Normal
AST 23
ALT 21
GGT 24
Doesn't look like resistance is an issue (hopefully I know it's not over till the EOT and 12 weeks bloods) But I am stoked baby! 8) 8) 8) Normal! Cal
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Way to go, Cal!!! Keep it up. You got this!
As for drinking 3 litres of water a day, squeezing lemon juice into it does make it a lot more interesting. I found I would drink more water with lemon in it than just plain water. And the lemon is beneficial in other ways too.
kim :)
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Did they pick the dehydration through your e-GFR, albumin and creat. levels? If it's any consolation mine were wacky in weeks 2-4 and they dragged me in for the same tests. For me, it was nothing too serious, a reaction to the drugs (probably riba) and slight dehydration. They reduced my riba dosage and it started to return to normal.
Carry a water bottle. All the time. Have a glass of water when you find yourself near a tap. Drink little but often. And remember, it will be easier when the weather warms up.
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Hey Cal,,,,how are you doing? Hope you are doing better day to day. I have been drinking the protein drinks 3 times a day since I found out I was going anemic....wow, what a difference, or it could be that I am making myself eat even if I am not hungry. Hope everything is going good way over there where you live. Man, I would love to go to Australia some day. I have an appt with my primary physician Thursday, I think I am gonna ask to have my vitamin levels checked, what the heck , it's a physical so why not. Let me know how your doing, haven't seen you post today
Scout
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Hi Scout, hi everyone!
I just got home from 3 nights in hospital. My sodium levels dropped from drinking too much water, I think I went over 3 litres! I also have a rare genetic condition called Bilateral Primary Aldosteronism (there will be a test on this ::)hehe. It's of the adrenals and I take sodium sparing and potassium building drugs. So I had to go off those and they've tweaked them and let my sodium come back to normal. They also restricted fluids to one litre a day, that includes soups, juicy fruit, custard, cereal milk etc. so I was pretty pleased when they told me I was normal and to try drinking two litres first and then build up if can. My Gastro came over and briefed them all on Viekira and has consulted everyday. My ribas were cut from 5 to 3 until Thursday when I have a fibroscan with my Gastro and I can ask him if tests show I can go back up. Had to have a bit if medication but can't be helped. I thought I was going to due. My head was stoned, my body felt like walking through treacle. Now I am just weak and tired. So that's my drama. But main thing still on drugs hooray. I was so scared I would be told to come off but no one had that intention but to get me through.
Scout you should come to Australia, it's amazing I live in Brisbane Queensland. I have been to Los Vegas, San Francisco and Hawaii. I love your country every is extra sized. When I went to the Grand Canyon, we drove and stopped Rosie's Diner (is that what you call them) it was like in the movies. I ordered pancakes and Rosie said to me, if you can eat the whole thing you get it for nothing. Well it was enormous and Rosie got paid for that pancake. Lotta fun. Cal
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Hi Phily,
I have no idea what tests revealed the dehydration sorry. I had struggling kidneys and had a scan on them. But was told in hospital that the kidneys were now fine. Cal
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Kim,
I'll get some lemons, that makes it much more palpable, though the thought of getting back the headache I had in hospital is enough to have me drinking that wTer! Cal
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I have read that too much water can be harmful. Glad your ok and get to continue the mess. I have been to Las Vegas several times but I have never been to Hawaii or California. I live in the Midwest, it's hot, sticky, and everything is big. From your yards to the steak you order...lol. Have you gotten any tests back yet about your viral load? Hopefully since they tweeked your meds you will have less side effects. Glad your still on the treatment train....
Scout
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Hi Scout,
Yes it was very harmful for me. I loved Las Vegas, but I didn't gamble, I just watched everyone and everything. Its sensory overload! What is your Capital city so I can look at the map. I don't get my VL until next Thursday when I see my specialist. I'll see him for my fibroscan 2 days, I don't know if he'll tell me then? Yes they've tweeked by Primary Aldosterone drugs and my ribas just for now. I am still feeling blah, but I've been in hospital I need to recover. Yes still on the treatment train. I'll be near death before I come off of that. This is my last chance. So it gets precedence.
You ok? Cal
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cal, the protein drinks 3 times a day have helped me tremendously. I was starting to get a little tired, I am pretty sure the anemia was the root cause of that. I have also been making myself eat 3 times a day even though I really have no appetite. I am a manager at a large retail store and I average between 25,000 to 30,000 steps a day when I work. Being low on Iron along with work kind of kicked me in the ass, but now I seem to be back on track. I live in Kansas City Missouri. If you look it up on the map, look right in the middle of the United States. Good luck on your dr. visit, I bet you come out undetected. It took about 4 days to get my results from the time they took my blood. That was as kind of stressful just waiting for them.
Scout
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Hi Scout,
I am really pleased the shakes are giving you energy. It's hard to deal with anaemia, you just wanna lay down. You have an energetic job and need it.
I found Kansas City on the map. It's a big city with a big river going through it. Because my vision is still blurred from the sodium drop I couldn't see the name of the river.
These bloods are my 2 week ones , it would be a miracle if I was UND! But never say never. Cal
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Cal, it's the Missouri River and yes it's very big. The city is large too, but I like it because it is very spread out. I have read people on here be undetected on their 2nd week test, that's just amazing. I wanted to ask you how you feel about these forums. I found that they really help me in several different ways. One is that people on here understand what I am going through. Unless you have this disease one cannot possibly understand what it is like. They can sympathize, but cannot truly understand what it's like having this beast on your shoulders. I also have found that I had been experiencing some self pity about why me? And how horrible my life is because of this disease. It made me realize how lucky I am that I am in much better health than I thought compared to a lot of people, and how grateful I am that I was able to get the medicine to cure this beast. It's nice to give and receive advice on even little things that I had no idea other people were experiencing also. It's been very therapeutic. Has being able to talk to people in the same situation helped you out stress wise?
Scout
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Oh Scout,
I agree, it's great to be amongst people who really understand you. I feel at home here. Others without HCV cannot understand what we have gone through and going through during tx. Thank goodness for these good people I am sincerely grateful.
The support and information is priceless we are very lucky to have each other online. Cal :)
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I woke up this morning feeling speedy. I know I read someone else was speedy on ribas? Did it last long and did it go away? Cal
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Hi all,
Just returned from GP. My sodium has dropped again so 1 1/2 litres water a day and Aldosteronism meds cut by 2/3 let's hope that does it. Don't want to go to hospital again.
V/L results from 9 mil to 54! Winner winner chicken dinner! :) today's bloods show LFTS have dropped a couple of points again. :)
Officially anaemic too. 8) I feel like I've joined an Elite club of RIBA takers.
Fibroscan tomorrow so more to report soon. Cal
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Your viral count is looking great. Hang in there. Hope the anemia goes away. I am going to GP tomorrow to see how my anemia is doing. I have been slamming those protein drinks and eating better. We will see.
Scout
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Congrats on the anaemia! It tells you your body is absorbing the riba! ;)
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Hi Scout,
Yes Happy with viral count and that was the 2 week one. It's 3 today, so one can only hope for................ (like Voldermort, cant say it :P)
Yes the anaemia is rotten. I feel my legs bowing and my heart rate is mental. As soon as I get off this fluid restriction I'll be back on my protein drinks, though they haven't helped thus far! I think though like Phily says that with Ribas its a good sign. I recall being anaemic in my first tx too. Cant wait to hear what your GP says about it. Cal :)
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Hi Phily,
Yep a sure sign! 8) Yuk! Cal
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Cal me too....I am hoping she will run a crapload of tests so I can see where I am. My GP is really nice. I am taking my other test results from the hep doctor so she can see where I am at. I am like a cow in a cattle line at the hep office, but my GP has been seeing me for years
Scout
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Hi Scout,
It's so important to have a good GP when you're txing. My GP and specialist talk once to twice a week so she is really involved. Good luck with yours my friend. Cal :)
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Just got back from my GP...she is testing me for everything...lol...vitamin levels and a bunch of stuff. Jeez... They took 8 vials of blood....gotta love her. My children really like her too. It's nice to have someone you trust and who believes you when you say something is wrong. My best friends doctors don't even listen to her, unfortunately her insurance is lousy and doesn't have much of a choice on who will see her.
Scout
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Hi Scout OMG! DO you have to have insurance just to see a GP???????? We have Medicare here. Anyone can access a GP and it's up to the GP whether they "Bulk Bill" (charge the Government the recommended amount) or whether they want that and a bit more then you pay the gap. Hope that makes sense. What a strange system you have?
Anyway she sounds good. Your Vit D may be low, it often is in Hep patients. I take Vit D and Zinc. Cal :)
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Cal, yes you need insurance to see a GP unless you want to pay cash. There are so many different kinds of insurance here in the states. It makes it very unfair to a lot of people. If you cannot afford insurance and don't make much money you can get Medicaid. It's government sponsored and I have heard and read horror stories about doctors not accepting it, and them not covering medications. I think a lot of people who have any kind of government sponsored insurance (including the VA) are getting denied hep c treatment saying they are not sick enough. I am lucky, I work for a large company and we have wonderful insurance. They covered my request for harvoni on the first request and honestly my liver numbers are really good. Even my doctors were surprised that they covered it for me. My GP will get all my tests covered by my insurance...she said it's all about how the doctors office codes it to the insurance. My best friend can't hardly get a basic blood test paid for because she has such lousy insurance. Here in the states it's all about the money!
Scout
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Hi Scout,
I see your liver numbers are really good on Harvoni. I am stunned about the Insurance. So it's about who you work for. Work provides insurance. So non workers do they have insurance? Can they buy it. I also have private insurance but that's about staying in a private hospital and getting your optometry, physio, dentist that kind of thing paid for. It's optional. But the public system us good and I was in a public hospital last week and it was fine. You get good care, just have to share a a room. My private hep Doctor came to see me there, they. Ross over. It's sad that Government medicals are denying tx to our brothers and sisters. It's equal access here. Mind you none of the orals have been passed by the Government yet. We are all waiting. They keep promising it will pass them. Meanwhile my HCV brothers and sisters are sourcing from India and China. Generics costing $900 and $3,500.00 respectively. Our HCV community as a whole has been treated dreadfully. Cal
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Sorry about typing mistakes I still have blurred vision from low sodium last week. Cal
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Yes you can buy insurance if your job doesn't provide it...but it's pretty expensive. We have government sponsored insurance that will pick up part of the tab to help people get insurance, it goes by your income. That insurance. Everyone here is required to have insurance. It's a mess honestly. The kind of care you get is directly relevant to what kind of insurance you have. It's unfortunate, but it's true. My best friend is literally dying from this disease and she cannot get the medicine, and yet I got the medicine and I don't even have liver damage yet. Hope you are starting to feel better now with the side effects. You are on week 4 now aren't you?
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Here in Australia everyone has a level of cover. Health care is universally provided. Those who pay tax pay a Medicare levy of one or two percent of their income, in addition to the usual income tax.
This provides us with free access to public hospitals as a public patient, along with the in-hospital care required. It provides us with a heavily subsidised access to GPs and specialists. Some GPs only charge the amount they are reimbursed by the govt, others charge extra.
All medication goes through a process of assessment and evaluation to go on the PBS - pharmaceutival benefit scheme. If it is approved by the PBS and listed, we pay a minimal amount for it.
You can take up additional private insurance, which gives you access to private hospitals and the soecialist of your choice. It costs a varying amount depending on whether you are single if have a family and which level of cover you choose. My medium level private insurance for my family which covers my husband, children until they are 25 and me costs me $180 either a fortnight or a month, I forget. I don't really need it and frankly I'm not quite sure why I have it.
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Hi Scout,
I really feel bad for you and your dying friend. I have 2 dying HCV friends as well who are past tx. It's not fair that your friend can be saved and insurance is not letting her. We have a substantial lobby group here for the meds to be listed on the PBS, thereby giving universal access, of which I participate. I have had my story, told from me and from my son printed in a book with other stories which has been presented to our Government to help the cause. I also did an interview on TV about access to the new drugs. We all do what we can. Do you have a strong lobby group there she could contact? Here we can also go to our local Member of Parliament in offices near our home and ask for an audience to put our case across. Individually it won't help, but as a collective bombarding our MP's we hope to make a mark. We have been promised November for the PBS listing....we'll see. Meanwhile people get sicker and beyond tx or die. This hcv is so stigmatised, lots are terrified to be identified. Myself included. Is it the same over there?
Yes I am on Day 23 (but who's counting?), so 5 more days and I'm 1/3 of the way through. I am starting to feel a bit better thanks. My sodium is still low but it has stopped falling, so that's good. I am being monitored very well by my Specialist by having tests every second day, so I know what my LFT's are on a running basis! Not sure when we have another V/L. We are only allowed 4 a year (paid for by medicare) I've had 2 already. I'll find out when I see my specialist again on Thursday. Bit more energy though. Cal :)
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Hi Phily,
You explained our system really well. I don't seem to be able to string two words together right now >:(
I wonder why I have my private Insurance too. But you know the law of averages, if you cancel it, you'll need something done that has a 2 year public waiting list!
When did you get comfortable with the anaemia? I can't recall being anaemic last tx, but it was a nightmare from beginning to end :-\. I feel a little more energised this morning. I couldn't do anything for weakness and breathlessness and palpitations this last week. Cal :)
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Yes having hep c in the U.S. Is very stigmatized. It's like you have the plague or something. Even doctors and nurses sometimes treat you like your a drug addict or a whore who got this disease because of living a bad lifestyle. I did not get this from doing drugs...pretty sure it was from the military, but even if it was from drugs who cares?? I certainly don't think anyone deserves a disease that kills for any reason whatsoever. But that is how people get treated here, it's ignorance. I had a nurse ask me over and over and over if I did drugs. I promptly called the state nursing board in our state and made a formal complaint. I also informed her that I hoped that if she had children that she didn't pass on to them her ignorance gene. I read an article about a guy (Jeffries I think) who was buying meds in India for citizens in Australia because the government won't pay for them for you guys. that's just a dam shame. My friend is too weak to work so she has state Medicaid...therefore she is considered to have insurance, so Giliad won't help, and Medicaid keeps denying her...if I can somehow get her the meds from India for 1,000.00 I am gonna try to get them for her. The way she is going downhill she won't make it waiting for the prices to go down here for sure.
Scout
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Hi Scout,
Mmmmm sounds the same as here in Oz. We are treated as scumbags. I was giving birth to my second child and was giving irth and the anaesthetist pull up by oxygen mask and said “How did you get Hep C?” I went into shock, what was a momentous occasion was ruined by this idiot. It was a reminder that no matter what I’m doing, I’m an HCV patient before anything else. It’s how I am defined as a person. I could tell you more stories too and that’s just mine. I know others in the same situation. It’s so unfair and cruel.
It made me smile when I read about you complaining officially about the nurse, good on you. I agree it doesn’t matter how you got this virus, it’s about now not what people did once upon a time. Yet I was asked again when being admitted to hospital last week how I got it. I said is that relevant to this situation now? He was a bit flustered but I hope the next person who comes along will not be asked.
Yes Greg is the guy sourcing from India. It was on TV here but no one was interested. Australia is a generally intolerant nation, sad because of its rich multicultural heritage. But intolerant of IV drug users hence the stigma and no access across the board to drugs. I do hope you can source the India drugs for your friend. I understand China is another source as well. I don’t know the laws in the U.S. about bring drugs into the country though. Better check that.
Gillead have made some huge profit of billions and have well covered the research costs. It is just pure greed on their part. Your friend really needs those compassionate drugs.
Cal
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Hey Cal,,,,I couldn't wait to get home from work today...my GP called me....viral load UNDETECTED!!! AST 17 ALT 10.....woo woo...
Scout
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Scout,
Brilliant work! How exciting you are slaying this demon. Good on you. Cal :) :) :) :) :)
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I have a terrible RIBA rash in my private areas, hands and thighs. It is not responding to cortisone cream. I am seeing my GP today. Hopefully there's a stronger cream. I can't sit down :-[ cal
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Oh dear my RIBA rash has ulcerated. I am having a time of it. GP has taken swab for the labs. I have to continue with cortisone cream until, I see specialist on Thursday. I've never heard of this before. Oh well never mind. Got some cool results today
AST 20
ALT 22
GGT 17
Dropping....... Cal :)
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Cal, those results are fantastic. It's working. Hope the rash goes away, I read on a thread a few weeks ago about someone else and rashes but can't remember where. The person on here names gnatty seems to be real good with threads and issues people have, maybe she knows. I am so grateful on my last set of test results and that the anemia has gone away. The protein drinks made a huge difference with me I believe.
Scout
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Dear all,
Stay out of the sun.
This advice maybe elsewhere on this forum, but it bears repeating.
My doc did not mention this important information until I was two weeks into treatment. Sun = rash and once you get it (sorry Cal) it can be very hard to shake. Sometimes the rash hangs around until end of treatment.
Like the virus though...it will be defeated eventually!
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I'm so sorry to hear about the rash and it ulcerating! :( Praying it'll go away soon.
Very happy to hear your numbers! So glad there are silver linings abounding :)
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Dear all,
Stay out of the sun.
This advice maybe elsewhere on this forum, but it bears repeating.
My doc did not mention this important information until I was two weeks into treatment. Sun = rash and once you get it (sorry Cal) it can be very hard to shake. Sometimes the rash hangs around until end of treatment.
Like the virus though...it will be defeated eventually!
Good info. Thank you for sharing. I would've probably risked Sun exposure figuring if I got the rash, it'd go away.
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Quick drive by posting before I take the dogs to the vet for their monthly cartrophen shot.
Scout, great news! Congrats!!
Cal, how much riba are you on? I'm wondering if your specialist is contemplating dropping the dose a bit? It feels never ending but it wil end and everything will slowly return to normal. Stay the course. It'll be worth it.
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Hi Scout,
Yes rashes are a sxs but I didn't have it this bad last tx. I swear the ribas effects are amplified with this tx.
Scout what are in your protein drinks? Cal :)
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Hi Saphire,
I have HCV related vitiligo as well as auto immune anti bodies to just about everything! So I don't go in the sun. I wear a rash suit in the sun a full body. I take Vit D. I just have to endure the rash pain. I might get an anaesthetic cream if I'm allowed to use that. Thanks for your words of encouragement, I am 4 weeks tomorrow!
Cal
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Hi Byebyec,
Stay out of the sun, you burn easier too. Always wear sunblock. Don't risk the rash. Are you washing in a non soap wash? Moisturising after with Aveeno or something similar. Ribas are very drying.
Yes there are silver linings and getting rid of the virus this time is my goal and dealing withe the fallout if post tx will organically evolve. Cal
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Hi Phily,
I've been on a reduced dose of 3 a day from 5 sine week two. He intends to keep me there. I know it's the ribas, but we daren't drop it any more. I wish we could drop it completely I hate it. It causes so many problems. Especially auto immune. My ras may be auto immune. Will let you know.
Phily do you have B12 shots? I have heard they are helpful. I am going to ask my specialist tomorrow about them. Cal[img] :)
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Hey cal, the protein drink I am using is called Boost...vanilla. I tried chocholate and strawberry but they were way too sweet. It is not as protein and vitamin packed as things like Ensure, because I wanted to be careful of too much iron and a few other suppliments. Generally it has 25% of the recommended daily stuff you need instead of a lot of drinks that have 100%. It tastes pretty good too
Scout
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Hi Scoutdoy,
Thanks for that. I think I'll get some as well. Reminded me it must be low iron thanks, I had forgot the impact of iron on the virus. Cal
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Amen Scout on the stigma stuff!
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Hi Byebyec,
Stay out of the sun, you burn easier too. Always wear sunblock. Don't risk the rash. Are you washing in a non soap wash? Moisturising after with Aveeno or something similar. Ribas are very drying.
Yes there are silver linings and getting rid of the virus this time is my goal and dealing withe the fallout if post tx will organically evolve. Cal
I am using pure organic coconut oil on my skin. So far just minor itches. Plus, I live in Alaska. So the Sun is running away from us right now and heading to Oz! There still are 13 hours of Sun, when it's not raining, so I will be very careful now that I've read what happens.
Thanks again for the info. Wishing you the best and quickest healing possible :)
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Hey Byebyec,
That coconut oil sounds good. I think it's about perfumes and additives which could irritate. Itches are normal, if they get bad ask your nurse about an anti histamine. I take one called Phenergan for when they are too bad. They were bad for me in first week then subsided.
Don't use soap to wash also.
So I'm stealing the sun from you! Sorry about that! I'm going to look at Alaska on the map. I find it so amazing that we are all so far apart but joined together by our commonality hep C. Cal :)
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Hi all,
Saw my Gastro today and he says we're definitely winning the fight! Music to my ears. I asked about my next V/L test and he said it would be at EOT. Rats, that's a long time to wait. Then 3 months after that for final V/L. I was hoping for one at 8 weeks.
I asked if my resistance test was back and it wasn''t, but he said, you don't have resistance, or we just don't know enough about it's mutations (he's a researcher too). He said if it comes back positive for resistance and I SVR. Then I'm a statistic for the researchers. Also Viekira Pak, it could be the drugs that we use for resistant positive people. Who knows? It's a game of roulette after all. I seem to be backing the winner! 8) 8) 8) 8) Cal
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That's great Cal...I know that anticipation can be a killer on tests. That's why I am glad I was able to get my regular GP to give me my yearly physical...and did a huge round of tests for me. I go see my hep dr. on sept 3. He is gonna do tests too. My insurance company has got to be saying to themselves "what the heck" but as long as they keep paying for it I don't care I like seeing the numbers. My hep doctor is a researcher also...
Scout
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Hi Scout,
Is your hep Doc doing a V/L? What week would that be? I was v/l 54 at 2 weeks. I just want to see that UND on paper, even though Gastro assures me I would be because of LFTS. I want a viral load test! ( stomp feet, pout sookily) :-\. Because we can only have 4 per year. Or we can pay for one, and that's not in the budget.
I'm going to the hospital today for physio on three bulging discs in my neck, and I've decided to catch the bus. Sounds sad, but I'm a bit excited to be walking again a month of taking it easy, mostly lying.
I went to what you Americans call the mall. I bought a celebratory handbag and wallet. Ahh the healing power of retail therapy. Now I have a fab new bag to stare st when I'm exiled to the couch arena again. Don't worry will not over do it. Cal :)
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Hey Byebyec,
That coconut oil sounds good. I think it's about perfumes and additives which could irritate. Itches are normal, if they get bad ask your nurse about an anti histamine. I take one called Phenergan for when they are too bad. They were bad for me in first week then subsided.
Don't use soap to wash also.
So I'm stealing the sun from you! Sorry about that! I'm going to look at Alaska on the map. I find it so amazing that we are all so far apart but joined together by our commonality hep C. Cal :)
Hi there Cal!
My GP just gave me Triamcinolone for the itches because they were turning into a rash. Powerful stuff cause it's already working. Wondering if it would help you??? It's a steroid cream... I've been taking phenergan too. One of a few pre-treatment hepc sx's I had was almost daily moderate nausea, bouts of month or longer "flu" and the peripheral neuropathy. Maybe that's been keeping it from going full on (?) Glad it's in the toolbox ;)
As for the Sun, it's only fair. We've had a most glorious Summer here in the Great North! Back to my igloo! :D It is straight up wonderful to have y'all here. INTERNET (((HUG)))
Tried to insert some pics of my magical 2015 garden and front porch containers... couldn't figure it out, thud!
Anyone know how to insert a photo on a thread?...
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Hey Cal, my hep doctor is going to check viral load at 4,8, 12, 12 post tx and 1 yr post tx.... My hep doctor also does research and asked if they could use my blood...sure...what the hell. Anyway, the 4 week test the nurse called and said it was detected but under 12, but when I got the actual paperwork from lab it said negative, I was confused. So when I had my annual physical ( which happened on week 6) I told my GP what happened and she said "well, let's just find out for ourselves just to make sure "and ran it again. I just love her. It came back undetected and my liver numbers were fantastic. Very happy camper here....LOL.
Scout
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Awesome Scout!
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Thanks by bye
Scout
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Hi ByebyeC,
I've often thought that I wasn't as sick because it attacked just about every other organ instead! Hehe.
I have no idea how to insert a picture of and igloo with a garden...sorry friend.
My rash is doing really well with the new cream, can't remember the name. Isn't the Phenergan great for sleep? Cal :)
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HI Scout,
You've got a great GP there. So its down to the Insurance Company to pay for them? Love you work Scout! Cal ;)
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Cal, I discussed that with her, and she said its all about how it's coded. She is a pro at getting tests done. If she retires anytime soon I am screwed! LOL
Scout
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Cal, your not gonna believe this but I have been feeling pretty good so I thought I would take on my yard. It's pretty overgrown and I thought I would trim it up and plant some pretty flowers. Wow, it looks great...but I am pretty sure that I now have poison ivy!!! All over! I gotta laugh though, because I don't even care! Life is good right now, and I am grabbing it by the balls, it's my turn to have fun and feel good, I have waited 30 years for this, and not letting anything throw me into that funk again. My kids are laughing at me because I usually yell at them every year when they get poison ivy from playing out by our creek, and now I have done it to myself.
Scout
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Hi Scout,
My GP went on maternity leave during my first tx and I told her how selfish she was ..joking! Yes good GP's are rare.
Poison Ivy, I've heard of it. Is it painful? It sounds like you couldn't care anyway. Good on you Scout, Live in the moment, the best of life is ahead of all of us. Cal :)
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Cal, do you not have poison ivy in australia? Luck you. It looks like bubbles on your skin that spreads in patches. It has like an oil in it so every time you itch it ...it spreads....uggggg the itching is the worst. I walked around with oven mitts on today so I wouldn't itch it....LOL
Scout
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Hi ByebyeC,
I've often thought that I wasn't as sick because it attacked just about every other organ instead! Hehe.
I have no idea how to insert a picture of and igloo with a garden...sorry friend.
My rash is doing really well with the new cream, can't remember the name. Isn't the Phenergan great for sleep? Cal :)
You're too funny Cal! :D
I'm so glad to hear it's getting better for you!!! Yay! I haven't noticed the phenergan making me sleepy. Maybe I've just adjusted to it since I've been taking it for about 6 months now (?) Does help with the nausea to be certain :)
So sad, no pics of my igloo garden... very very sad :P
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Oh Scout,
That sounds terrible. I couldn't say for sure that we don't have it. But I've never known anyone with it. Poor you,, on top of riba rash! Cal :)
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Hi BeybyeC,
Gosh Phenergan doesn't make you sleepy? Boy it knocks me out! I've never taken it for nausea.
I want to see the igloo ice flowers! There must be a way! Drats!
How's the headaches?
I have the shakes today after my expedition into the hospital by bus and thenmy son telling me he wants to drop out of uni! Farout man how much can a koala bear?
Cal :P
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Hey cal, I don't have a rash nor am I taking riba..and I am really glad for that. How are you doing? I know you have been having some side effects from the beginning. Although your having the side effects, I am glad you are getting the chance to get cured. How are your numbers doing?
Scout
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Hi Cal,
No headaches today. Yay! Just feel like I've got the flu. Typical for me. Trying not to get freaked by my new alt #... Chime in with choruses of it's all fine please? No crickets.
Children! Why DO we keep feeding them for crying out loud?!!! ???
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Raised ALT is recognised sx of VPak and riba. Don't panic.
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http://blogs.hepmag.com/lucindakporter/2014/12/abbvies_viekira_pak.html
See?
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Raised ALT is recognised sx of VPak and riba. Don't panic.
Thank you Philly :)
I did read through the link below this post. 5x higher than normal range being "normal during tx" is around 250. So... calming down :) Just don't want anything to interfere with me finishing this tx! PHEW! ::)
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Hey Scout,
Sorry I forgot you were on Harvoni. No riba you lucky girl! Yukky bitter sweet drug.
My numbers are great and falling all the time.
AST 20
ALT 22
GGT 17
Don't know my VL at 2 weeks was 54. So Doc reckons would be und now. Cal 8)
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Hi all,
Today my vision is so blurred I can hardly see the letters on the screen? Has anyone else had this sxs? Cal :)
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Hi all,
Today my vision is so blurred I can hardly see the letters on the screen? Has anyone else had this sxs? Cal :)
haven't heard that as a side...although it did happen to me.. turned out I needed a new contact prescription.
dm
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Looking around I found that viekira can cause blurred vision if used with drugs that are inducers or drugs that are inhibitors of CYP3A4.
Are you on any other prescriptions?? If so , you need to call abbvie first thing tomorrow, talk to one of their pharmacists and let them know what other meds you are taking.
abbvie = 847-283-8901
dm
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Hi all,
Today my vision is so blurred I can hardly see the letters on the screen? Has anyone else had this sxs? Cal :)
http://www.webmd.com/drugs/2/drug-167494/viekira-pak-oral/details/list-interaction-details/dmid-1074/dmtitle-strong-cyp3a4-inhibitors-slt-low-strength-antimuscarinics/intrtype-drug
I also saw (can't find it now,) that viekira can cause blurred vision with inducers of cyp3a4. These are listed in the literature that came with your viekira. check it carefully.
dm
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Hi all,
Today my vision is so blurred I can hardly see the letters on the screen? Has anyone else had this sxs? Cal :)
From what I'm reading inducers of cy34a are a big no no with viekira,
inhibitors of the enzyme can cause problems too.
both can cause blurred vision.
http://www.pharmacytimes.com/publications/issue/2008/2008-09/2008-09-8687
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Hi all,
Today my vision is so blurred I can hardly see the letters on the screen? Has anyone else had this sxs? Cal :)
Hey Cal,
Most definitely have had this sx. Every day a couple of hours after taking VP and ribas... From about day 4 on. I read it is a sx and told my GP. She's just advising me to report any worsening...
Here's to hoping this too passes, as I've read on others post's/blog's, the sx can dissipate around mid treatment! (?)
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HI DM,
Thanks for doing all the research for me. I have checked the lists and I am not taking anything on them. my specialist knows exactly what I am on, especially after my recent hospitalisation they went through every drug for interactions and cut me down on one which I take for a rare disorder I have, Bilateral Primary Aldosteronism for which I take Spractin. I took a double dose of Phenergan (Promethazine) last night I wonder if that is interacting? I was itchy as all hell last night. It makes me dopey, maybe it's causing the blurred vision? Cal
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Hey Byebye,
Thanks for that reassurance. My last tx, shot my sight and I had to get stronger glasses. It shot my hearing too. It's so horrible not being able to read anything. I wonder if I still have a magnifying glass somewhere mmm that could help. It is a bit better this afternoon, but this morning I thought I was legally blind! (and blonde) hehe. Cal 8)
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Hey Cal,
I'm hoping since it comes and goes that this isn't permanent. It is a really disturbing sx. My doc doesn't seem bothered by it at all. Rather churlish I say! ;D
Lol Cal :D Reese Witherspoon's starring in that movie in 2025 bahaa :D
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HI DM,
Thanks for doing all the research for me. I have checked the lists and I am not taking anything on them. my specialist knows exactly what I am on, especially after my recent hospitalisation they went through every drug for interactions and cut me down on one which I take for a rare disorder I have, Bilateral Primary Aldosteronism for which I take Spractin. I took a double dose of Phenergan (Promethazine) last night I wonder if that is interacting? I was itchy as all hell last night. It makes me dopey, maybe it's causing the blurred vision? Cal
Good to know! Guess as long as it goes away or doesn't get worse.. you're good.
I had the itching bad for weeks 2-8. Always on may face. It was weird. No more itching now though.
dm
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DM,
Good to know it goes away. I moisturise my w hole body with QV and still have my scaley bits. But I also have the prickly heat type itch yukarma! Cal
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Hi Byebyec,
It's not as bad today. I think I'm back to normal. I didn't have phebergan last night. That might be it. Who knows? Cal :)
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That's really really good Cal :)
We're all so different when it comes to how meds affect us huh? But, so many of us are having the same... Weird, but that's life. So glad it's gotten better today. We need to see, so we can stay together in this!
<3 bye
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Yes I need my forum friends!!!! :'( Cal
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Hi all,
I got a call from the Hep C Council Queensland and I am invited to represent heppers or consumers as they call us in a Q and A session with all the big movers and shakers in HCV land, Doctors, a Researchers, consumers, Government officials, HCV workers etc. they are going to call me to let me know what they want me to talk about, but as one if the first on Viekira Pak and indeed the orals in our country, I am to represent the HCV community. I am so excited. I have done a TV interview 6 months back and had my story published and handed to the Government with other stories published by the Australian Hep Council. I hope I can do it justice. We have to get the drugs here. My brothers and sisters are dying and or getting past tx in some cases. Others just need go tx ASAP. Exciting. Cal day 33, :)
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That's very cool Cal
Cal
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Wonderful Cal! You'll totally rock it.
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Thanks Gals, I hope I don't start crying????? :'(
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Fantastic Cal!
Very excited for you! Give us the details and maybe a link so we can hear how it goes :)
Cheers! 8)
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Hi all,
I got a call from the Hep C Council Queensland and I am invited to represent heppers or consumers as they call us in a Q and A session with all the big movers and shakers in HCV land, Doctors, a Researchers, consumers, Government officials, HCV workers etc. they are going to call me to let me know what they want me to talk about, but as one if the first on Viekira Pak and indeed the orals in our country, I am to represent the HCV community. I am so excited. I have done a TV interview 6 months back and had my story published and handed to the Government with other stories published by the Australian Hep Council. I hope I can do it justice. We have to get the drugs here. My brothers and sisters are dying and or getting past tx in some cases. Others just need go tx ASAP. Exciting. Cal day 33, :)
Way to go! Proud of you! Representin!
dm
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Hi Byebye,
I am unsure if it is being televised but hopefully they will get a radio station to cover it. I'll find out more in the next few days and let you know. So hopefully a podcast.. If not maybe a transcript. I hadn't thought about coverage. Cal ::)
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Hi DM,
Well thanks very much, but it is nothing any of us wouldn't do for our HCV community who are waiting desperately for these orals. You may have read we have yet another Prime Minister here. The other one was s**t. He had no interest in spending money on our drugs, and Gilead weren't coming down in price. Though AbbVie came in cheaper. The new PM is not of my personal political persuasion but he is actually a good leader, or so it seems now, give him a few weeks. ::) But we have a better chance of being heard under the new PM. I think?
I might have said already that a lot of people are going to India for the generics and also China. They are telling us not to but not giving us any options. I figure if they were willing to poison us with ifn then I'd take my chance on generics if I had to. Some Doctors here are writing prescriptions for Chinese Doctors. Our Doctors are desperate too. We are a rich country in the midst of economic crisis and cuts have been made, to all the wrong things. Yes we need cuts but its more economically viable to tx on orals and have heppers back in working as economically contributing members of society than to have us draining the health system and waiting on liver transplant lists that never end. We just want them to see reason. Hohum. Sorry got off my bicycle a bit there. Rather passionate about the cause. Cal :P
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A M E N Cal!!! Go get 'em tiger! :D
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Cal, it's obvious how much you care. I'm so glad you are able to advocate and share your experience with specialists and others that could be influenced to help us for the better!
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Thanks Byebye and Bree,
I promise to do my best. Cal :)
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Cal , Good for You. Go kick some butt & get the help Your fellow Ozzy Heppers need and deserve. You are awesome. Hope all Your buddies down under know that. I have faith that You will make Your mark and spark changes badly need in Your Homeland.
Fight on Spartans!
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Hey Cal, By the way,I follow Your posts all the time, Now My phone recognizes as one of My frequently visited sights when I get alerts from the forums! LOL!!! If You can convince My phone , just think what You can convince those guys when You meet with them!!!!!! Passionate I believe is an understatement!
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Cal, it's unbelievable that the rest of the world is getting on board with these cures. Even though it's a challenge sometimes getting it approved. Good luck Cal, you will do great!
Scout
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Oh Tommy,
I wish I had your faith. We have been fighting this fight for about a year now. Our PBAC (Department who recommends new drugs of all sorts for all illnesses) recommended to the PBS (the department who funds and puts them on prescription for us) to put Gilead and AbbVie through, it is ok'ed then by the TGA. I guess a bit like your FDA. The drugs are stuck at the PBS stage so far.
I am but a small cog in a huge wheel of Hep C Council and NGO's, Doctors and researchers and other hepper advocates. But I do my little bit when asked. I am truly one of the lucky ones to be on these orals on compassionate grounds. I owe it to my friends to speak out. We can't forget our community even if we are lucky enough to svr I have lived this HCV life for 30 years and since last tx in 2011, I have made so many dear friends. I have been a part of so many people's lives, some have svr'd some are txing some are getting sicker, some are beyond tx. It's genocide plain and simple if we can't get the drugs that everyone else has. I think it's Australia that is the only Western country to not provide their people access to the drugs. It's Australia's shame, hidden, because of the stigma.
I shall do my best. I'm getting over excited. I'll have to rest!!!! Glad to know I have such power over your phone, hehe. Cal 8)
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Yes Scout,
It is unbelievable. I recently heard November could be the date. Maybe they will be shamed into it. Who knows? Cal :)
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Cal, it's all about a war of attrition. One battle at a time will wear them down to the point of winning the War!!!! I posted an anecdote somewhere here before that applies to Your situation. Do You know how You can eat a whole ELEPHANT??????????? One bite at a time My Dear, one bite at a time!!!!!!! You have it in You. Find Your inner Warrior and let him out. It is in us all but to be released upon discovery!
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Cal, I was talking to my specialist at St Vincents- he said price negotiations are nearly complete and it is almost ready to go to cabinet.
Turnbull has at least one acquaintance who has had access to trials /early access and should prove more sympathetic. Here's hoping.
It's important to keep agitating nonetheless!
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Thanks Tommy,
My inner warrior has been resting since my last horror tx in 2011. But I am finding her again through this cause. She's in there just not as confident as she used to be! :-\
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Hi Phily,
Yes my Gastro says similar things, and I have a friend who's child has HCV and mum cleared after 3 ifn attempts, and now it's the child's turn. She attends St. Vincent's too, and is hearing the same thing. Let's just hope that Turnbull does has that compassion in him.
Yes we must keep being visible, despite being hidden from everyone's consciousness and eyes. Cal :)
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Hi all,
I got real unwell yesterday arvo and my GP sent me to the Hospital. My BP keeps plummeting. They don't know why, I have to keep moving which brings it up. It's been 80/58. But if course was normal at the GPs and the hospital. But I found the cause of my blurred vision, it's the low BP! Will get my GP to tell my Gastro. Cal :)
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Oh my goodness Cal!
Praying for you and your docs to get that back to normal asap!
<3 Bye
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Thanks Bybye,
I'm sure I can do a few star jumps during the day to get it moving! :) most people gave high BP as a sxs? Boy oh boy! Cal ::)
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My bp dropped a little and another friend on vp said the same thing. Mine has need verging on high (up to 140/80-85) before treatment. It sat in the sweet spot of 120/70) through treatment.
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Phily,
That's, comforting to know that it's a side effect. I worry because I have the Aldosteronism and cardiomyopathy. But There's nothing I can do. If I move around it stays up. Cal :)
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Hi all,
I am just back from the Thyroid specialist and they want to remove my thyroid because of goitres which have over taken the gland. I have a croaky voice and difficulty swallowing. I am still absorbing this. I need to research it more. I have made an appointment for 6 months away so that tx is over and done. It was the ifn that screwed up my thyroid. I have a perfectly functioning thyroid before tx. I hate ifn. Thanks Goodness for orals. Cal :'(
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Oh Cal!
This makes me so worried for you. I'm glad you're holding off for post tx. Who knows what craziness has been caused that'll be alleviated once it's gone for a bit...
Is there anything, besides you jumping up and down, they can do for your bp? Seems it'd be hard to do that AND get sleep ever.
Love and best wishes,
bye
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I'm thinking of you Cal! Take it easy on yourself...
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I think it's important not to jump into any rash decisions about your health until and unless you need to. You never know how Tx might be affecting things. Just keep on keeping on. Treatment is your most important job right now.
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Thanks gals,
I am totally focused on tc. That's why I said I'd come back to the thyroid Doc in 6 months. It'll have to cone out I have 7 goitres and 2 huge ones that have taken iver the gland. They are stable enough for me to wait though. It's not on my radar to be thinking of such a huge op now. We are so lucky that we don't have to have ifn anymore.
Sincerely thank you for your good wishes and advice. Cal :)
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All the best. Your first month is behind you. Only two more. You've got this.
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Phily,
Thanks darling girl. I have been meaning to ask you if you had 4-5 days worth of drugs left in the bottles at the end if the month? I have and will have at least another near 2 weeks left over, so am going to put it to my
Gastro that I take them? Cal :)
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Hey Cal, is the thyroid problems you are having related to the hep c or previous meds you have taken for hepatitis? Bummer with the problems you have been having. Hopefully you will have less side effects since you are 1/3 done now. I am 3 pills into my last bottle...woo woo. I have an appt next week to have blood work done again. I am pretty happy with my numbers so far.
Scout
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Go Scout!!!
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Yes I did Cal. At the end of 24 weeks I had 24 days worth of meds from memory. I didn't take them, although my nurse said I could if I wanted. By the time 24 weeks was up I was done. I might have felt differently at 12 weeks.
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Bree, you should be almost finished aren't you? How are you doing? I have to say I am very excited that I made the move to get on this medicine. I know several people who are having such a hard time getting approved or just won't go to their doctor because they are f0 or f1 and are waiting,,, thinking that they have plenty of time. I jumped in the arena after reading that once women go into menapause a large level of protection dicipates and being 48, I didn't want to take the chance. I prefer to stay at f0 if possible.
Scout
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Hi Scout,
The thyroid problems are from the interferon, it is notorious for causing thyroid issues. I had no problems before I started tx and after I did. So it was put down to that. However, nobody would put that on paper. I don't know why they protect interferon so much. It's poison. I guess it doesn't matter if it effects my thyroid this time, because it will be gone soon! Hehe.
3 pills, you've killed it Scout. Hooray, fireworks, champagne (non alcoholic :-\). You must feel brilliant. Job well done. Cal :)
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Hi Phily,
So you did too, It's an Australian thing then. I know another viekirian who is doing the 24 weeks and his Doc told him to take the left over 3 weeks. He wasn't happy at first. He's ok now. I think with only doing 12, I will do it too. Cal :)
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Hi Scout,
I', F0 as well. But look at all the others things it's done to me. They are only just realising all the other damage to other organs it is doing. So good on you for jumping in. Cal :)
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Sorry my post was unclear. They said I could if I wanted but after 24 weeks they really didn't think it would matter. I stopped right at 24 weeks - my correct end date.
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Cal, I told myself if this medicine cured my hep I would quit smoking. Looks like I better get myself prepared
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Hi Phily,
Yeah I understood that and agree after 24 weeks you've done enough my friend. Cal :)
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Ooh Scout,
You'd better get those nicotine patches after you SVR. I wouldn't go cold turkey just yet. When you know your clear you can make a decision. It's not easy to do, I quit at 22 and it was one of the hardest things I'd ever done, that's till tx came along if course! :) cal
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I'm going to have to go on anti biotics. I have a sore throat, cough that hurts and a fever. I hope you can take anti biotics. I'll find out. I thought today, all this sickness is helping to pass the time! Gotta be positive. Cal :)
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Phooey!
Someone needs to throw you a break so you can catch it!
I checked the antibiotic thing out before tx, I know 2 that are contraindicated with VP + Riba, one is Amoxicillin and the other is Clarithromycin. Most others are ok. Your doc will know...
Way to have the right attitude Cali girl! With all you've been through, I know I'd give you a big ole pass if you were grumpy with me :)
bye, actually I guess I will go by BBC! It makes me sound all British-ey (right??? :D ) and brilliant, haha! ???
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Yes Cal, it's gonna be tough. I have been smoking for 35 years. I have a book that is a 6 week program that gets you to do things to break the habits you do when smoking. Its pretty interesting. We will see. But I am gonna give it a shot! I read that most antibiotics are safe on treatment, with the exception of two or three. Hopefully your doc gives you something to make you feel better.
Scout
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Hi scout,
Great that you have a plan. If you can do tx you can give up smoking!
I'll get the Doc (my GP is away for. Few weeks) to check up on the anti biotic he prescribes for me. Cal :)
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Great, I'm being check for mycoplasma pneumonia. Just had tests and get them back Monday. Explains chills and sweats, sore throat cough etc etc.didnt think it was sxs but who can tell. I have anti biotics till then. I want to cry but I am wearing my big girl pants Byebyec! Stupid replacement GP, tells me you will have something going around, because you're not on interferon, so. You should be feeling ok. I nearly tore him a new one Eejit :-\cal >:( >:(
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Cal! Cal! Cal!
For Pete's sake! Good on you big girl Cal, lol :D But, it's your party! You can cry if you want to! :'(
That's some bizarre medical "logic" from your GP... You should be feeling wonderful you silly girl! Oy :/
Alaskan size (((HUGS)))
Marianne
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Cal, Dear God Girl!!!!!! All My sides pale in comparison to the trials & tribulations that You have been having to endure!!!! Your perseverance in the face of such great adversity is amazing to say the least. Hopes , prayers , hugs, kisses , good vibes , whatever the hell it takes to get You back to abnormal coming Your way from Texas.
You cry Your heart out if You need to!!!!! I won't tell anybody, OOPS. They are all reading this!!!! Good things & positive thought coming Your way from Me & My I-phone that You took over! LOL!!!
CRYING DOES NOT MEAN THAT A PERSON IS WEAK-----BUT IT MEANS THAT A PERSON HAS A HEART!!!!!!!!
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Cal, you obviously control your emotions better than I when it comes to people's thoughtless statements . Unfortunately I know what would have come out of my mouth if a GP said that to me ...."So, since you know how I have been feeling GP, just when did you go through treatment and poison yourself with interferon, because you have hepatitis and then endure another round of treatment on top of that you asshole" oh wow....I am feeling better! LOL
Scout
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Hi Cal, My heart is with you. You are amazing.
I have a wicked smart but very low emotional I.Q. and very large ego specialist. Sometimes his comments bother me for days. I'm so grateful his nurse is amazing. And my internist is amazing to the max. Means to an end.
I just have to shake off the ignorance of others and so glad we have each other.
We're here for you... much love. Bree
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Hi Marianne,
Thanks for the hugs, much needed. Lovely. It us my party isn't it? He's a replacement while my GP us away on holidays so knows nothing and isn't afraid to flaunt it! He told me I wasn't on an immunosuppressant. Ribavirin is one. He said notes from your specialist say the drug aren't immunising, so you'll just have flu. When he prescribed the amocillin, I asked him to check for viekira interactions. I spelt it for him and he said your spelling it wrong. I said it's not passed here it's on compassionate grounds. He said how can I look it up? I said google. He awkwardly laughed and said good idea. I knew I was on a winner then. :'( cal
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Thank you Tommy,
It's a worry when you start thinking ifn tx was easier than this! I have been unlucky. Once I have this under control, I'll be ok. I am half. Way next Thursday, so that milestone has my attention! It's kinda good to know the symptoms are related to a sickness rather than an extreme tx. Yes I am making a meal out if this tx aren't i? Hehe.
I am feeling the vibes and care and wishes coming from you and your phone! Hehe. Cal :)
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Scout,
Thank you. You said it for me. They have no idea. On some level this type if GP thinks I should be suffering. You know what I mean? Cal :)
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Bree,
Thank dear one for that. I am amongst friends here. My little asylum in this mad chaotic world which is ours. My specialist would be appalled if he knew what the eejit said to me. I have a great specialist, just not readily accessible. He probably hasn't had one with so many problems on oral tx, then these drugs are un chartered territory. We are the first batch of mice through the maze. :-\ yes thanks to you and my forum friends. My family and friends are starting to get bored with me being sick. How do they think I feel? Doh ! Cal :)
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Cal, it's like this ....once a pharmacist said to me " you really should reconsider taking this strong of a painkiller" yea and "you should really feel what it's like to have a broken back and how my head feels from getting nailed by a bowling ball in a car accident" if people knew more facts before they judge you, they wouldn't sound so ignorant. That's one of the problems with having hepatitis...so many are quick to judge and assume your a drug addict or live a bad lifestyle, or nurses and doctors who think symptoms people feel are not real. It's a very sore spot with me and irritates me when I hear it happen to other people too. Hope you get feeling better, and can have a pain free day soon
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One thing my specialist mentioned to me was a clever little app from the Uni of Liverpool that charted drug interactions between HCV drugs and many others. It's available on the App Store and Google play. I have used it at more than one gp appointment to check if I should take another drug. It's called the Liverpool Hep iChart.
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Hi Bree,
Yes, I think we all have worse stories of being judged erroneously. I don't care how people got this personally, I've made too many real friends in the HCV Community. I don't judge them. No one asks how did you get it? It's the Doctors I was thinking if asking at the q and A if this was a question asked on medical grounds or sticky beak values? They have no idea what strength it takes to take tx on. Also to carry around HCV itself. We are warriors and should be treated as such. Cal 8)
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Phily'
Thanks, I am downloading that app as we speak. Brilliant idea. We really ate the advocates for our own health. Info is empowering. Cal :)
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Scout sorry, that last post to Bree was meant for you. Sorry Bree. My head is banging today, very weak. NO excuse, I do apologise. Cal ;D
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Cal, at least in our country the medicine is available. I hope yours approves the meds soon. I wonder how many years it will be before it is reasonable in cost. I read that several new ones are coming out but I think Gilead is the manufacturer of them, so competition probably isn't going to be a factor for awhile
Scout
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Hey Cal, it's fine... I agree with you and Scout anyway.
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Hell Scout, you guys are lucky, except the horror stories of people who r too poor to access it. No insurance etc. I recall your friend? But it will be great when we get access though I heard today it's looking like Jamuary now and triaged access. Which wArehouses my friend until they are churro tic enough to access care. Not acceptable I will certainly be bringing that up at the Q and A. We were told access to all. Hate these moving goal posts. Stupid Government. Cal :(
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Hi Marianne,
Thanks for the hugs, much needed. Lovely. It us my party isn't it? He's a replacement while my GP us away on holidays so knows nothing and isn't afraid to flaunt it! He told me I wasn't on an immunosuppressant. Ribavirin is one. He said notes from your specialist say the drug aren't immunising, so you'll just have flu. When he prescribed the amocillin, I asked him to check for viekira interactions. I spelt it for him and he said your spelling it wrong. I said it's not passed here it's on compassionate grounds. He said how can I look it up? I said google. He awkwardly laughed and said good idea. I knew I was on a winner then. :'( cal
Hey Cal 8)
Bwahaa! "knows nothing and isn't afraid to flaunt it!" :D You crack me up!
"How can I look it up?" umm... YIKES! crawls away in fear for one's life, leaps to mind!
Oh dear Heaven. I think he owes you a lab coat and a stethoscope.
How're you doing today?... Any better?
Sticky beaks indeed!
<3 Marianne
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Marianne ,
I'm ok in the morning cough wise but am really weak. Then evenings the cough steps up, it's like I'm barking? Other than that I'm peachy. :)how are you doll? Cal
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Hey Cal :)
That just sounds d r e a d f u l!... Hope that 5 year old stand in Dr. of yours gave you good cough medicine!
As for me, mild riba cough. Heavy nausea day. Feel like I have the flu.Yesterday was good though.
Your pile on of sx's makes me feel like the big whiney babby that I am though ;D
Cheers to better, hep c free days!
Marianne
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Oh Marianne,
Don't compare to me for goodness sake. I went in sick, I didn't expect it to be easy. Truthfully, I didn't expect it to be this hard either :'( yes 5 year old Doctor (love it) let's me know ?Monday the test results. Will post as soon as I get them. I gave a friend on 24 weeks with similar flu type illness and she's been on anti biotic for five weeks. Have to ask my specialist about being on probiotics? I must remember to have Greek yogurt everyday, but it makes me nauseous.
So your having a nauseous fluey sxs day, sorry darling, tomorrow if another day. Viekira the gift that keeps on giving. Cal :-\
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Cal,,,,how are you doing? Are your side effects getting any better? I was thinking about you earlier and hoping that the side effects have taken a break and given you some stress free days. It's been a rough road for you, but a quitter you are not! LOL!!! Just wait until this is all over and you can look back and go WOW,,,I MADE IT, AND I WON!
Scout
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Dear Scout,
I'm ok. Kickin and gougin my love. Infection still with me but not as bad. I did my 6 weeks bloods today. So see my GP next week Tuesday and the following week Thursday I see the specialist.
I have a low grade stress feeling a lot, like I'm working really hard but I'm not? Ribas I think. I am losing some air too. But that happened last time. I went out today and did some groceries and came back and lied down. Today is best day I've had for a while.
Yes it is all worth it and I'll look back, and will vaguely remember counting down 12 weeks. Blah! Cal :)
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Hi all,
I had my first sleepless night last night. Intake 2 RIBA at night and 1 in the morning , do you reckon I could swap that round? I'll also take it earlier. I took a sleeper but it did nothing.
I also woke up like I had run a marathon. Hopefully it's just under used muscles being used again after the last 6 weeks hospital, infection resting etc. etc. but have to go out today to sons lecturer appointment. Hope I can understand what he's talking about. :-[ . Cal
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I took my pm riba dose 2 hours before taking my last pm viekira pill.
I don't think it matters.
If you are on only 2 , I would definitely take em in the morning.
Call Abbyvie and talk to tech.
I would definitely take as early as you need to so you can sleep.
and no caffeine if you are a coffee drinker, etc.
dm
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ps - my coughing/wheezing that I had for 6 weeks is just now starting to go away.
Went to doc 3 times about it. I assume it was the riba.
I had chills too... teared up a lot too.
Its a tough fight....hang in there!
dm
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Hi DM,
Oh yes the cough and the chills. Also sweats. Yes it ain't no picnic . But I am hanging in. I just took some ibuprofen. That seems to have helped a but. Oh test and the watering eyes. I also get a nose bleed most days. I am anaemic enough without losing any! Cal >:(
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I took my pm riba dose 2 hours before taking my last pm viekira pill.
I don't think it matters.
If you are on only 2 , I would definitely take em in the morning.
Call Abbyvie and talk to tech.
I would definitely take as early as you need to so you can sleep.
and no caffeine if you are a coffee drinker, etc.
dm
Hi DM,
No only drink ware and one cup of decaf tea. I'll change the dose around and have it at 5.30 instead go 7.30pm 9h great another time to remember to take a pull! I see my specialist next Thursday and I'm sure he won't care. He doesn't seem to think we need the ribas at all. Must be newer research out. Thanks. Cal(http://)
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Hi DM,
No only drink ware and one cup of decaf tea. I'll change the dose around and have it at 5.30 instead go 7.30pm 9h great another time to remember to take a pull! I see my specialist next Thursday and I'm sure he won't care. He doesn't seem to think we need the ribas at all. Must be newer research out. Thanks. Cal(http://)
Since you are down to 3 , I don't think it really matters a bit when you take them.
Yeah, I had 3 times to remember.
dm
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Hi DM,
Yes went down from 5 to 3 in that second week I ended up in hospital. It still feels like I'm on 20! I have Riba rash all over now, I look very attractive :-* I also have riba rage, which has been a shock, I didn't get it last time. I nearly punched my sons door and stopped myself. He was so shocked. I explained to him about the riba rage and he said I've never seen you so mad. He was scared. I scared myself. :-\
Do you feel different today not having your VPak fix? Cal :)
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Hey Cal, don't be too hard on yourself. It's the riba. I had it on the last treatment... I was a nut case and had to hide in my bedroom most of the entire year to keep from who knows what. If someone (especially my loved ones) just walked past me, it ticked me off. If someone asked me a question, it ticked me off. Everything ticked me off.
You are quite special for all that you have been through and how you are coping. You are in my thoughts and I hope after this treatment everything wonderful in the world happens for you!
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Darling Bree,
You are to kind to me. Kinder than I would be to myself anyway. Yes I know rationally it's not my fault, but it's like being possessed! It sounds like you has your share of possessions!
Bree thank you for being so good hearted, Cal
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Hi DM,
Yes went down from 5 to 3 in that second week I ended up in hospital. It still feels like I'm on 20! I have Riba rash all over now, I look very attractive :-* I also have riba rage, which has been a shock, I didn't get it last time. I nearly punched my sons door and stopped myself. He was so shocked. I explained to him about the riba rage and he said I've never seen you so mad. He was scared. I scared myself. :-\
Do you feel different today not having your VPak fix? Cal :)
Yes, I feel different.
Not better, just different.
It takes awhile for the riba to get out of your system, as I understand it.
dm
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Yes went down from 5 to 3 in that second week I ended up in hospital. It still feels like I'm on 20! I have Riba rash all over now, I look very attractive :-* I also have riba rage, which has been a shock, I didn't get it last time. I nearly punched my sons door and stopped myself. He was so shocked. I explained to him about the riba rage and he said I've never seen you so mad. He was scared. I scared myself. :-\
Hang in there, Cal! The riba can be tough, for sure. I had some problems with rash, and more probs with riba rage. Had to deactivate my Facebook account. I was just going psycho-berserk on people. And I was having near-psychotic rages where I just could not think straight. Fortunately I live alone and can keep to myself when I want to or need to.
Stay strong! It's worth it in the end.
kim :)
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DM,
That sounds really ominous. Yes apparently RIBA is in plasma for approx 4 or so weeks but it's in hidey place for up to 6 months. So you will feel the RIBA for a little while. Apparently it's not enough to be therapeutic, but I like to think it's helping out in some way to get us to SVR. Don't be despondent DM, you're UND heading to SVR. You can deal post tx, you've done it before. I think we all put our post tx stuff down to ifn and didn't give RIBA as much blame as we should. You'll bounce back eventually, you had a good tx so I think sooner rather than later. Cal :)
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Hi Kim,
Yes, relationships are very tenuous on RIBA. I belong to an Australian forum and have done for 5 years. I got into a fight (not like me, I'm a peacemaker if anything) with a friend. We are lunching Tuesday, or he is dropping in. I guess well have a laugh about it. He's a relapser too after 60 weeks on SOC. So he knows RIBA rage oh too well. He was posting that I was misunderstanding and noypt getting what he was saying. He was right. Biy am I glad I didn't post the elaborately mad postings I constructed. It's really hit me hard this time.
Living alone sounds really nice Kim. I guess your in the north? I'm an inner city dweller. Cal :)
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Hi Kim,
Yes, relationships are very tenuous on RIBA. I belong to an Australian forum and have done for 5 years. I got into a fight (not like me, I'm a peacemaker if anything) with a friend. We are lunching Tuesday, or he is dropping in. I guess well have a laugh about it. He's a relapser too after 60 weeks on SOC. So he knows RIBA rage oh too well. He was posting that I was misunderstanding and noypt getting what he was saying. He was right. Biy am I glad I didn't post the elaborately mad postings I constructed. It's really hit me hard this time.
Living alone sounds really nice Kim. I guess your in the north? I'm an inner city dweller. Cal :)
Hi Cal. I live downtown in a small heritage cottage (originally a coalminer's cottage) in a town of about 80,000 in Canada. Will save the rest of the details for when I "out" myself and start doing some advocacy work. Not quite to that point yet… ;)
I have lived alone all my adult life, since I was 20 or so. I'm 61 now. Solitude is bliss for me.
kim
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Canada!
Oh Kim I've always wanted to go to Canada, my father lived in Ontario as a child. It looks so beautiful. Where you live sounds like bliss I have a picture of it in my mind's eye. Living alone sounds very attractive at the moment to me! Hopefully I won't hate everybody in the world soon! Hehe. Cal :P
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Canada is gorgeous. I'm heading over in Dec to see my daughter who lives in Vancouver. Last time I went over I travelled from Van, through Montreal, Quebec, Toronto, Halifax and on to Newfoundland. I also popped over to Vancuver island for the weekend and took the snow train to Jasper. I had a fabulous time.
This time I hope to get to Ottawa, more TO and over to Tofino. We are also planning on going to Cuba.
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DM,
That sounds really ominous. Yes apparently RIBA is in plasma for approx 4 or so weeks but it's in hidey place for up to 6 months. So you will feel the RIBA for a little while. Apparently it's not enough to be therapeutic, but I like to think it's helping out in some way to get us to SVR. Don't be despondent DM, you're UND heading to SVR. You can deal post tx, you've done it before. I think we all put our post tx stuff down to ifn and didn't give RIBA as much blame as we should. You'll bounce back eventually, you had a good tx so I think sooner rather than later. Cal :)
Thanks Cal. Everyday is different. Didn't sleep one minute last night... it was weird..my mind was just racing from one thing to another and could not get the tune to Strauss's Blue Danube to quit playing in my head... drove me crazy... I was actually glad to get up and get this day over with. Had work, but fortunately I was able to show a video to 3 of my classes and then play a stupid pep assembly and they had to play for a Leukemia walk, had to take a 1.0 time release Xanax to make it through the day. Made it all tolerable.
Your right though , the last time I actually got used to the post tx sides and just learned to keep my mouth shut.
Fun times!
dm
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Hi Kim,
Yes, relationships are very tenuous on RIBA. I belong to an Australian forum and have done for 5 years. I got into a fight (not like me, I'm a peacemaker if anything) with a friend. We are lunching Tuesday, or he is dropping in. I guess well have a laugh about it. He's a relapser too after 60 weeks on SOC. So he knows RIBA rage oh too well. He was posting that I was misunderstanding and noypt getting what he was saying. He was right. Biy am I glad I didn't post the elaborately mad postings I constructed. It's really hit me hard this time.
Living alone sounds really nice Kim. I guess your in the north? I'm an inner city dweller. Cal :)
Thats funny! i got in huge arguments on Med no Help. And also got kicked off that forum that was about lords and ladies...and I wasn't even fighting there.. I was just trying to help people learn about IR and how it effects tx. There were all like "well the doctor say, bla , bla, and you have to go with what they say"....it was so weird... don't know why they were so "Don't talk about IR"....they were really hostile to the whole idea.
Riba... the drug that keeps on giving.
dm
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DM,
You sound like you had a difficult day. No sleep is pretty tough but we can cope, wer'e tough cookies us txers. Xanax and valium my favourite little helpers! Yes when you think about the past post tx, this is going to be nuffin". Keep rolling with the punches DM and one day it'll be over in a snap!
Yeah fighting over the smallest point and being so angry with others for not agreeing. Getting in fights over mental stuff that we would normally just shrug our shoulders over and think what a twat! Too hilarious getting chucked off of Med Help that's the teenage equivalent of being chucked out of the pub! Our forum has been onto IR since I joined 5 years ago, I went onto a low GI diet as soon as I joined the forum. I should re visit the IR ting, because I returned a high blood free glucose reading, which is a sxs of Vierkira, note: 'that sometimes does go away". So need to watch our IR on Viekira too! Cal :) PS You'll sleep tonight.
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Canada!
Oh Kim I've always wanted to go to Canada, my father lived in Ontario as a child. It looks so beautiful. Where you live sounds like bliss I have a picture of it in my mind's eye. Living alone sounds very attractive at the moment to me! Hopefully I won't hate everybody in the world soon! Hehe. Cal :P
It is very beautiful here, Cal. Even though I am right downtown, I have deer and raccoons in my backyard. (Not such a great thing for the garden, mind you - the raccoons broke all the branches off one of my beautiful and bountiful fig trees in July before I figured out what was going on!) And while I don't have a bear swiping the apples from my backyard like Katie did, there were three bear cubs just 2 blocks away on my street in a vacant lot that had some untended apple trees. So nature is pretty much at the doorstep here. ;) I am a keen birdwatcher and have many opportunities close at hand.
kim
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Canada is gorgeous. I'm heading over in Dec to see my daughter who lives in Vancouver. Last time I went over I travelled from Van, through Montreal, Quebec, Toronto, Halifax and on to Newfoundland. I also popped over to Vancuver island for the weekend and took the snow train to Jasper. I had a fabulous time.
This time I hope to get to Ottawa, more TO and over to Tofino. We are also planning on going to Cuba.
Wow! That's quite the itinerary, Philadelphia. I PM'ed you in case you are coming through my town and have time to meet up. :)
kim
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That would be nice if you could meet up
Scout
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Cal, I have been working full time with young kids and today was the first day I just looked at my boss and said "I can't do it, my legs are here, they just don't want to carry my torso..lol" and left work. I have been working a lot but I am just plum wore out! I have sixteen days to go, but I seem to wear out pretty easy this last weak. I blame it on work though, I walked 32,500 steps on my shift yesterday. Eeeeegadds
Scout
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Thats funny! i got in huge arguments on Med no Help. And also got kicked off that forum that was about lords and ladies...and I wasn't even fighting there.. I was just trying to help people learn about IR and how it effects tx. There were all like "well the doctor say, bla , bla, and you have to go with what they say"....it was so weird... don't know why they were so "Don't talk about IR"....they were really hostile to the whole idea.
Am wracking my brain trying to figure out what "IR" is. Probably something really obvious…
kim
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Kim, now you got me too....something with Interferon RIBA and the rage it causes during treatment? Dunno, now I am curious. Interferon rage? Lol
Scout
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It is very beautiful here, Cal. Even though I am right downtown, I have deer and raccoons in my backyard. (Not such a great thing for the garden, mind you - the raccoons broke all the branches off one of my beautiful and bountiful fig trees in July before I figured out what was going on!) And while I don't have a bear swiping the apples y a mini from my backyard like Katie did, there were three bear cubs just 2 blocks away on my street in a vacant lot that had some untended apple trees. So nature is pretty much at the doorstep here. ;) I am a keen birdwatcher and have many opportunities close at hand.
kim
OMG Kim,
It sounds like out of the movies! Raccoons and deer. Wow and bear cubs, too cute! Though I assume their mummies and daddies aren't that cute. So they go for apples? Bird watching too, what a wildlife paradise.
I am inner city but we still have possums and bush turkeys, lorikeets, parrots and my dog Smithers! My beautiful boy a mini fox terrier. He's old now blind in on eye a bit deaf, still naughty as ever.
I am a cat person really, but he's a family dog. And my sons are grown up, so who's left with the dog? Mum of course. Cal :)
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Scout,
A lot of people work on this tx. I tried to work last tx but had to give it up. I was in medical research in PSTD. I loved my job and my patients but I couldnt think clearly. It's horrible to admit it's got to you, but if work has been heavy going and tx has been exhausting, easy or not, then it's ok to let yourself off the hook. I hope you get a good rest and be gentle with yourself. Cal :)
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Scout and Kim,
I. R. Stands for Insulin Resistance. It was a big thing in info and RIBA tx. The lower your I. R. The better your chance of clearing. Also HCV predisposes you to diabetes.
So now you know!!!
Cal :)
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I actually think I am getting a cold. Bummer, there are a lot of people sick at work and my kids go to different schools,,,EEEEK...NOT NOW.... I am so close to being finished!
Scout
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Scout and Kim,
I. R. Stands for Insulin Resistance. It was a big thing in info and RIBA tx. The lower your I. R. The better your chance of clearing. Also HCV predisposes you to diabetes.
So now you know!!!
Cal :)
Thank you Cal. Good to know! :)
kim
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I am inner city but we still have possums and bush turkeys, lorikeets, parrots and my dog Smithers! My beautiful boy a mini fox terrier. He's old now blind in on eye a bit deaf, still naughty as ever.
I have not seen any of those animals "in the wild" - well, maybe a fox terrier. But not the others. Oh, I did see parrots in the jungle in Guatemala. No doubt different species from what you have in Australia. Have always wanted to go to Australia for the phenomenal birding I could do there. A whole world of new (to me) species to add to the Life List. :)
kim
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DM,
You sound like you had a difficult day. No sleep is pretty tough but we can cope, wer'e tough cookies us txers. Xanax and valium my favourite little helpers! Yes when you think about the past post tx, this is going to be nuffin". Keep rolling with the punches DM and one day it'll be over in a snap!
Yeah fighting over the smallest point and being so angry with others for not agreeing. Getting in fights over mental stuff that we would normally just shrug our shoulders over and think what a twat! Too hilarious getting chucked off of Med Help that's the teenage equivalent of being chucked out of the pub! Our forum has been onto IR since I joined 5 years ago, I went onto a low GI diet as soon as I joined the forum. I should re visit the IR ting, because I returned a high blood free glucose reading, which is a sxs of Vierkira, note: 'that sometimes does go away". So need to watch our IR on Viekira too! Cal :) PS You'll sleep tonight.
It was a longggg day for sure.
I actually didn't get kicked off med no help, I got kicked off the website thats all about Lords and Ladies and you to certain levels like Squire, Knight, etc. There's a watered down version still up...
I didn't worry about IR on Viekira.... with these new meds I don't think it really matters...fingers crossed.
dm
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Kim,
You'd love the birds here. My Dad feeds them in his garden every morning they cluster around the bowl, biting each other and the bread and honey. It's truly beautiful. He used to have a big bird bath in the old house (he's in a villa now, he's 89) and they would flutter around on hot days. We used to have cockatoos in the wild at our house on the hill, before the
Bed elopers moved in. That's the problem here. South east Queensland is one of the largest growing areas in the world. It us becoming unbearable. Houses are being sold for u it sites everywhere . The habitat is being ruined. We gave had a number if corrupt premiers of our State who bend to the developers whim, if you know what I mean. Cal :)
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It's funny that you talked about watching the birds yesterday, as that's exactly what I was doing as I was doing the draws and admin for a big equestrian event we are running. I am on 5 acres here and I have quite a few trees and shrubs around me. When I look out the window as I'm sitting at the table, I can see the bird bath, a lilac shrub, a big hawthorn bush, a mock orange, claret ashes and lots of other trees.
I'd just refilled the bird bath yesterday so all the birds dropped in for a saturday bath. It was like watching a mini Serengeti waterhole in action. Minus the lions of course.
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DM
Did you sleep ok? Poor you ???
I'm afraid you lost me with the lords and Ladies thing DM! Sounds a bit Dungeons and dragons ....kidding ::)
Yeah apparently there has been some glucose readings that are high and I read that this doesn't always resolve as a sxs of ?Viekira. I am about to re group on the whole IR thing. I had a high glucose reading which went back to normal, but I am not going to play Russian roulette. It's not that different to what I eat, I just need to buy low GI rice, cereals etc and remember what is what. Will print out a shopping list.
Cal
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It's funny that you talked about watching the birds yesterday, as that's exactly what I was doing as I was doing the draws and admin for a big equestrian event we are running. I am on 5 acres here and I have quite a few trees and shrubs around me. When I look out the window as I'm sitting at the table, I can see the bird bath, a lilac shrub, a big hawthorn bush, a mock orange, claret ashes and lots of other trees.
I'd just refilled the bird bath yesterday so all the birds dropped in for a saturday bath. It was like watching a mini Serengeti waterhole in action. Minus the lions of course.
Your place sounds beautiful. We have to get away from the city. I have always lived here because of work and the theatre. I never thought I would want to move away, but it's getting so crowded, such a rat race. It's not the place it was even 5 years ago. Wouldn't mind northern NSW but the boys are still at uni, so were stuck until they finish.
I dream of being on acreage and having that peace. You are very lucky.cal :)
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My glucose was way high at the beginning (14.8 ) and settled down to be mostly still too high (8 or so fasting).
My GP wanted me to start "doing something" - drugs or something. My specialist wanted me to wait till the treatment was finished and everything was out of my system.
He won.
I'm totally ignoring it for a month or so more.
I don't eat a lot of processed foods, don't drink soft drinks or carbonated sweet drinks, get exercise and am pretty slim.
I'll see how it goes.
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DM
Did you sleep ok? Poor you ???
I'm afraid you lost me with the lords and Ladies thing DM! Sounds a bit Dungeons and dragons ....kidding ::)
Yeah apparently there has been some glucose readings that are high and I read that this doesn't always resolve as a sxs of ?Viekira. I am about to re group on the whole IR thing. I had a high glucose reading which went back to normal, but I am not going to play Russian roulette. It's not that different to what I eat, I just need to buy low GI rice, cereals etc and remember what is what. Will print out a shopping list.
Cal
Slept good last night! Thanks for asking.
I just can't to the low carb thing anymore. Anyway, ever since I went UND , I have not been hungry all the time and able to eat far less food. I am assuming I am no longer IR... a symptom of HCV.
Will get a fasting glucose and insulin blood test as soon as I am svr.
Bet it will look normal!
dm
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I'd love to live in the city. No, scratch that, I'd love to have a place in the city! And my place here.
Five acres isn't much, but it's enough. We've got a few BIG sheds, a workshop, three stables, a round yard, 5 paddocks and a house. The house is only small but I figure it's less to clean. We only have the one horse on it now, six chooks, two dogs and a big orange cat.
My partner's parents have 10,000 in NW NSW but that's a bit too isolated for me now. We used to live in the outback but eventually the lack of opportunities for the kids and the need to send them away to boarding school wore me down. Luckily my job is transportable.
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that's really interesting DM. I've been surprised at how full I get on what seems like less food than before. I wonder if it's what you are talking about.
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DM and Phily,
Yeah you guys are close to SVR, you've finished tx so wait till you get results, then like you say DM check IR. I didn't think it mattered on this tx but after getting the one of high reading I panicked. Dad had diabetes 2 and the HCV predisposition just irked me a bit.cal :)
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Phily,
Be great to have a unit in the city so you could still be in the cultural hub of things and keep your acreage. I'd like that. Cal :)
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that's really interesting DM. I've been surprised at how full I get on what seems like less food than before. I wonder if it's what you are talking about.
yep! and not as hungry between meals too, I'll bet.
dm
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Phily,
I recall one if your earlier posts about a test to see if you have too much RIBA in the body. What is the name of the test, do you recall? Thanks. Cal :)
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It's called a Ribavirin level test I think. ;)
I still have the paperwork in my car, I'll have a look tmw.
Basically it operates from the basis of determining a ribavirin dosage that maintains a range that provides a therapeutic benefit. Now some people don't hold with it, but my specialist does. When they ran this test on me they found I had a significantly higher concentration of riba than many and that's what was causing me grief.
They immediately reduced it and I picked up quickly.
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Thanks Phily,
Much obliged, cal :)
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Phily,
I am going to ask the GP today to ask my Gastro for my visit next Thursday. Is it a blood test? Thanks. Cal
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Yep
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Cool. Cal :)
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Hi y'all,
I'm thinking, with all the riba/rage and riba/bawling that I'm going to request that test too. I'm on 1200 mg a day.
Seems like once it built up in my blood, I took the train straight to crazy town,population me. Dearest family and friends...Please stay back 50 feet, cause I'm a genuine 3-D chemically induced, nut job right now...
Was gonna say "you have no idea how certifiable this bleepity bleep bleep bleeping stuff is!!!" But YOU DO!!!
God bless you all for sharing, cause I've got hope now that it'll calm down... Thank YOU JESUS!!! And than you forum friends!!!
<3 Marianne
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Marianne,
I lost the plot seriously for a few weeks there. I am still a danger to myself and others. ::) I try now to keep my mouth shut, because I have no judgement at all.
We've all been to Crazy town compliments of Ribavirin. Sometimes it's hard remembering what normal is. Then I put down the knife and ask my sons nicely to make their beds.........mmmm.....its the ones around close to us that hold up the mirror. The look on my son's faces just tells me straight away now, I'm being a loony tune.
Don't be hard on yourself chickie, it's part of the package. Cal :-*
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Hi Y'all (I said it just lie you guys do!)
I went to the GP and my specialist is in Vanuatu on holidays, so she couldn't call him about the Riba Test. But said it was a great idea. She got a text from him checking up on me. He really is a caring professional man. I am lucky. She also devoured the Immunology Journal publication on HCV co Morbidities (called something else, I got it on Marianne's link I think. She wants me to give it to my Specialist. I shall have to word it nicely. Just in case he's been researching that for 5 years or something. :-[
Bloods: 1/10/15
HB 107 bit low (115-165) not drastic
AST 22
ALT 17
GGT 15
Pretty stoked with that! Cal 8)
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Cali Girll!
You crack me up just when I need it the most!!! Finally, this morning, I'm starting to feel the werewolf fur starting to fall off, the fangs recede, the hump on the back of my neck is slowly disappearing...I'm starting to feel almost pre-loony, hands in the air!!!
Thanks all for making me see I wasn't alone.
Thanks Cal for virtually holding my hand while I flew over the cuckoos nest, muah!
<3 Marianne
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How are you feeling today, Cal?
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Cal,,,,I am almost ready to start my final countdown... ahhhhhh..what the hell....
"12"
Scout
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Cal, I don't know if you watch baseball at all...but if the Kansas City Royals make it to the World Series I swear I am going to get tickets and have a giant sign to hold up that has a picture of me slaying a dragon! A friend of mine is an artist!!!! You will have to look for me!
Scout
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Scout, Did My last one this morning. Yours will be over before You know it. BTW, I wouldn't go to Alaska right now. I heard tell there is a wicked blonde haired she werewolf in the loose right now. Shedding everywhere. Good Luck on the last twelve .Still working on how I am going to cut out the smoking thing. I guess that will be figured out on the other side.
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Tommy, Congrats on your completion!!!! Right there with you on the smoking thing....maybe I will start a thread on post tx and we can go through the breaking the smoking habits and quitting like we have done on this thread for the hep treatment...LOL....honestly, talking to others that truly understand what I am going through, instead of feeling all alone,,,really helped me. Don't know why, but it did, and still does,,,
Scout
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I patched up the day my first bottle of Harvoni shipped. Strange since I'm paranoid about supplements or OTC meds of any kind while taking this. But quitting and getting rid of the HCV just seemed like two such huge monkeys, I might as well go at 'em at the same time.
For me, without the nicotine patches? Fuggadaboutit. Most addictive thing on the planet, bar none. But the patches make it doable. This time of the year it gets easier in the PacNW too. Never was an indoor smoker so when it starts getting cold and wet outside, it's a royal pain in the butt. A million sane reasons to quit but damn hard.
I'm pretty sure they'll always smell yummy to be me. Fresh second-hand smoke, that is. I just won't be a reformed non-smoker like this >> >:( "Gross! That smells awful!"
I miss 'em. But I'm old enough to miss a whole lot of wonderful things. C'est la vie.
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Marianne,
Don't worry there's plenty of time to hold my hand yet! 5 weeks to go. Will start countdown soon! (Maybe a bit premature!)
Glad you're ok chickie. Cal :-*
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Hi Else,
I'm ok thanks. The ribas keep tricking me, telling me I feel good and to go out. Then by the afternoon I am R.S. shaking, weak, painful muscles etc. But it's worth it to get out. All worth it though to connect with the land of the living. Cal :)
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Scout,
12..........yes time to countdown now!!!!
No we don't get the American baseball here? I don't think? I'd try to stream it though to see you in the crowd! Cal :P
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Tommy,
Hooray on EOT. Goodbye pills!
Me and Perc were in Alaska this morning and I think I saw a blonde werewolf! Perc was scared, but I tickled her not so furry tummy. Cal :-X
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Scout,
We're in our tribe, that's why we feel safe. Cal ;)
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Else,
Virtual pat on the back there, patches and pills together. Well done! Cal 8)
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Hey else, Good for You & Good Luck. NEW handle---- PATCHES!!! LOL!
Scout , You working on that banner? Houston beat the Yanks last nite!!
Cal, Hope things are a little better today!!! Like that thought---- Global Tribe of Heppers. I would assume we accept all , including Werewolves and imaginary friends!! LMFAO!!!
Marianne, You can run but You can't hide!!! I SEE YOU!!!!!! LOL!! Perci told me where You were!!!! He sees everything he said!!!!!
WHEN WE TALK TO GOD, WE ARE PRAYING! WHEN HE TALKS TO US , WE'RE SCHIZOPHRENIC!!!
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I watched the game last night, we were hoping that Houston would win, the Royals have some psychological bad vibes with the yanks! GO ROYALS!
"11"
Scout
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Patches! LOL I love it. Too bad there wasn't a pirate avatar. And as it turns out, I step down to the next smaller size patch on the day of my 4 week labs. It'll be the first time I've been to my HepC doc's office since May. Well, not counting the trip to deliver some paperwork that just couldn't seem to be received via fax on their end. No matter who sent it. Darnedest thing.
just when you thought is was safe to go back in the water - dun dun, dun dun, dun dun... ;)
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Hi Tommy,
I figure were fighting a war together, we must be a tribe. Yes. Global tribe. There's enough of us to form our own minority group! Ir tribe. Cal :)
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Eplse,
I used to laugh at your other avatar, it was so comical, nows I get a fright. You'll but that virus to death. Shark attack, get out if the water! Cal :-*
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Scout,
11 like it a lot. I'm on 5 week count down now. Cal :)
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Cal, how are you doing today? 9 days left...I am almost scared to quit taking the Harvoni. I know that sounds a little weird.
Scout
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Cal, how are you doing today? 9 days left...I am almost scared to quit taking the Harvoni. I know that sounds a little weird.
Scout
I know what you mean, Scout. I have never been a pill-taker in my life - no prescriptions, not even vitamins or health supplements. But then 12 weeks of Harvoni comes along... and I feel like I owe my life to pills and Big Pharma. Haha! Shortly after I finished treatment (and got all sick with a mysterious post-tx malaise) I found out I was deficient in some vitamins and minerals (iron, B-12, D). So I am now taking those pills each morning as religiously and devotedly as I did the Harvoni and Riba. It's as though my brain can't shut off this new (and for me artificial, counter-intuitive) belief that health comes in a pill. But this too shall pass. I expect to get myself back to a pill-free status soon.
Congrats on nearing the finish line!
best,
kim
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Hey Kim -
I know a lot of us (at least here in the Pacific NW according to my GP) are deficient in Vitamin D. But do you think Harvoni was involved in the B-12 deficiency?
oops - on edit, that's likely caused by ribavirin induced anemia.
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Hey Kim -
I know a lot of us (at least here in the Pacific NW according to my GP) are deficient in Vitamin D. But do you think Harvoni was involved in the B-12 deficiency?
oops - on edit, that's likely caused by ribavirin induced anemia.
Hi Else. I don't think either the Harvoni or the Riba were responsible for my B-12 or iron deficiency. I think I had those 2 going in due to years of vegetarian diet plus drinking lots of black tea, which inhibits absorption of both iron and B-12. I probably had the Vit D deficiency going in too. The anemia caused by the ribavirin is hemolytic anemia - not iron-related. But of course, if you happen to also be iron deficient for other reasons, it will be harder and longer to recover from the hemolytic anemia after you stop the ribavirin. My red blood cells kept climbing post-treatment, but my hemoglobin would not budge from treatment levels even after 9 weeks post-treatment. I think because my body did not have enough iron to make hemoglobin for my new red blood cells.
As for the Vitamin D, I have seen reference in journals to Hep C patients who are the hardest hit with the riba-anemia also showing the lowest levels of Vit D. Whether the ribavirin causes a drop in Vit D, or whether those people started out low in Vit D, I don't know. But that is why I ended up having my Vit D checked. It was in the low end of the 'normal' range. I would rather have all those things be in the high end of the normal range. :)
cheers,
kim
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Hey Tommy,
Still think Perci is a straight up TRAITOR!!! ;D Ask him how Tommy is for moi s'il vous pláit?
Cali girl,
How the heck are you???...
Else, Love the s h a r k!!!
Kim, you are like the app on my phone when it comes to vitamins. Everytime I see your posts, I grab a d3 and b12... So I should add iron if I develop anemia?...
Scout, so happy you're done! Can't wait to join ya!
<3 Marianne
-
It's long been a test done here in Oz before tx but D and B12. Li have been on Vit D since first tx in 2011. My B12 has been ok. But friends have B12 injections whilst waiting tx. HCV does cause low Vit D and B12.
Interesting RIBA anaemia is linked to Vit D. Recently doubled Vit D and have been feeling slightly better. But could be a coincidence, my GB is rising as well? Anyway, they are 2 essentials fir us. Cal 8)
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Scout,
I know what you mean about the pill and psychological crutch type thing. I am so used to planning my life around these pills which are at last taking me to where I yearn to go, well -dom! The thought of not having this life giving elixir everyday and depending on it's previous good work to keep me UND and to SVR is bloody terrifying! Cal :'(
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Marianne,
Je suis tres bien. Le RIBA est ca va. I'm doing ok my friend. Brain clearer. Mood lifted. Giant cold sore on lip, I am the Elephant man! Body still complaining about the raised energy use. It doesn't like being used, says it feels cheap. Hehe Cal :-*
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Tout es bon! Ah the Riba... the bloomin' riba :P
Lol Cal :D Keep on kicking till we've knocked 'em all down!
<3 Marianne
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Byebye....I am not there yet 9 more days....well 8 sort of....depends on if I can get the one that flipped behind the stove...
Scout
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Sorry Scout!
Did you try the trick with the duck tape on a dowel or a long kitchen wooden spoon, ruler etc
?...
Must've mixed you up with all the other finishers. Brain fog brain fog brain fog....
We shall celebrate again then :D
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Shoot, I couldn't even get it moved out enough to get a broomstick back behind it...., apparently there is only enough room behind there for a $1200.00 pill to fit through. My ex is going to come over and disconnect the gas and get it for me. Guess I will be nice and cook him dinner or something...LOL
Scout
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Mariane,
Yep we're all still kickin and gougin'. We're getting there dear one. We can do it. Cal :)
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Scout,
The pain and agony of a lost pill. You poor thing. It's like losing a diamond! Sorry you have to make dinner for the ex. It will be worth it. Cal :-*
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Scout, That means 8 days to figure out a way!!! Or cooking dinner!!! I think dinner is a wonderful way to show You are making it just fine. Just to be safe tell Marianne to send Traitor , OOPS, I mean Perci over for backup!
-
LOL
Scout
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Got the pill! Had a nice breakfast, and apparently should have moved the stove out a long time ago, it was kind of gross under there...lol
Scout
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South,
I have the same issue with my fridge. But I can't be bothered, I'll wait till I drop some Viekira pak under there! Cal :)
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I am telling you cal it was like a slow motion film...I saw it bounce and flip and my hands just wouldn't move fast enough..did get the floor nice and clean under there...apparently your supposed to pull your stove out more than once in ten years...lol
Scout
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I think it's everyone's worse nightmare losing a pill! I can see it I in slow mo too! Cal :'(
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Scout,
This may make you laugh, actually all of you, but I've been missing one of my morning orange pills for the past week. Searched everywhere around the pill box. Several days later, I find it under my sewing table with the orange licked off and various and sundry "particles" attached... We have a one year old Labradoodle...Thank Heavens he didn't find the inside delicious as well! :D And, yes folks, I had to go rinse it off, so I can p u t i n m y m o u t h...hurl!
I just love our puppy, but as Job in Arrested development says "Come on!"
Glad you got your precious pill back Scout
<3 Marianne
https://www.youtube.com/watch?v=81Nl7VYFEaI
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Byebye that is too funny. My boss was looking at me because I was laughing out loud. It's amazing some of the things we will do isn't it? Well I rinsed grease and some kind of furry stuff (lord only knows what it was) and slammed it....hurl...LOL
Scout
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Well byebye...now at least you have an excuse...my dog ate my harvoni :)
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Marianne,
That's hilarious. Dogs will eat anything. You're lucky he didn't hobble it Dow. My dog Smithers eats anything that hits the flor. Bottle top, caps, paper, plastic. He doesn't wait to find out if it's edible!
Live that you rinsed it out and threw it down the hatch. Each pill is a precious gem. :-* cal
-
good thing you did not have to wait for the dog to do his business
-
Beto,,,how are you feeling now that you are done with your meds
Scout
-
Beto,,,how are you feeling now that you are done with your meds
Scout
-
good thing you did not have to wait for the dog to do his business
Good on ya!!!!! Cal :P
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You naughty Beto!!! Eeeeeewwwww!!!! :P :P :P
-
teehee
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Hi all
8 weeks tomorrow. I am starting to feel better each day. I see the specialist tomorrow and will ask if i am having a V/L at 12 weeks. Boy I hope so. I see the GP today and I had Bloods yesterday, LFT and FBC . So will have something to report.
Does anyone else get brain zaps or jerks when falling asleep? They went away but came back this week? Cal :)
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Hey Cal,
I had 2 or 3 jerks while I was sleeping. Kind of like the feeling you get right before you fall off a cliff. weird. Glad they weren't common.
How many more weeks do you have left on tx?
dm
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Cal has 4 1/2 weeks left of a 12 wk course. 'Cause I'm all minding other people's business. (3 hours sleep last night and punchy as a loon right now! :o)
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Scout,
Sorry just saw this...I am fair since end of meds. A bit moody, but pretty good energy. Of course like everyone else concerned about EOT bloods. Hard to know because other sort of big stuff is goin down.
Cal- Congrats...keep on truckin' you gots this!!
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Thanks Else for the update on Cal,
Sorry to hear about your sleep issues.
Thought I was over the insomnia but had to take an ambien the other night.
It comes and goes.
I can tell I still have riba in my system cause I still get the weird little itches on my face...no rash... just scratch em and they quit itching.... so weird.
dm
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Hi DM,
So they a sxs to! Where do these ribas get off terrorising us? It's spooky. I have 4 weeks left tomorrow. It's 6.40pm Wednesday night here. 18 hours ahead. Cal
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Else,
you poor darling" Punchy as a loon! At least your still making me laugh, minding other people's business, hehe. Cal 8)
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Thanks Beto,
I had some blood results today. Pretty happy.
AST 24
ALT 21
GGT 14
HB 122 (115-165) reference. So normal!
Cal :)
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yeah Cal...woohoo...them's some small numbers yo... ;)
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Thanks Beto,
Yes they look pretty good to me. I am just back from the Gastro and he has put my riba up 1 pill a day. on 4 a day again. Yippee! Feel like a deflated balloon. Cal :(
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Cal,
Hang in there girl friend. I know, easy for me to say from the fence of EOT and having not had to endure the rigours of ribo. You are going to beat this thing.
peace
beto
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Oh Cali girl!
Just hide all the household weapons and warn your family lol :D 4 more weeks!!! Go Gurrrrllll!!!
xoxoxoxox
Marianne
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Cal........3days left
Go Royals
Scout
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Beto,
Thanks. I will get over it. I have been crying and am pretty upset. But have yo suck it up. Cal :)
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Marianne,
My husband was all out out by my news so I punched the kitchen bench and hurt my hand! Yes hide those weapons, and I haven't even gone up one RIBA yet!
Cal :)
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Good on you Scout. Don't eat them all at once. No more under the fridge or being eaten by our pets either! Cal :)
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Cal, why did they add the extra riba?
Go Royals
Scout
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Thanks Beto,
I had some blood results today. Pretty happy.
AST 24
ALT 21
GGT 14
HB 122 (115-165) reference. So normal!
Cal :)
Good numbers, Cal! And good for you for hanging on to your hemoglobin somehow with the ribavirin doing its thang! You must be into Week 8 now? My hemoglobin was 96 by then, and I was feeling it!
kim
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Hi scout,
I'm upping the ribas because my HB is not too bad. It was 107 2 weeks ago but climbed incredibly. We want to give it all we can, not knowing if I am resistant or not because if previous txs. I probably am resistant. Still waiting for test results. Been waiting for 9 weeks, they only do them in batches of 50 so don't know where I am. However my Gastro saw the dude who does them at a seminar and asked to put mine through ASAP. However, they are finding that resistance isn't an indication of SVR anymore! There are no studies long term. But I found a small one yesterday which I'll go find and post back here again. So Doc wants to throw as much as we can at it and ribas raise the stakes, so has to be done.
So hoping for SVR but also not getting too excited if you know what I mean? Gastro thinks we've got it beat but I'm a relapser so I take a lot if convincing!
Merck has apparently in development a drug that negates resistance completely! How cool is that? Cal 8)
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Hi Kim,
Into week 9 now. Yep back on another RIBA because HB has shot up to mildly anaemic! So looking to go under again. Was around 107 about 2 weeks ago. Happy days ahead. May also be extending another month. Not set in stone yet. Im in the groove now, what's another RIBA and another month? It'll mean I'm only half way. But I'll be killing that *******!!!!! Cal :)
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Here's that link to a very small research group on retreating after relapse on DAAs.
http://www.natap.org/2015/EASL/EASL_69.htm
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Hang in there Cal! This does have an endpoint... you will get through this and it will be worth it. I am holding space for you that you will be cured with this go round. It's just your time, that's it!
I've been so busy, I haven't had time to get on the forum. I'm doing really well... I have more energy that I have had since I can even remember. Amazed. Grateful.
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Cal, your gonna make it...meeting guy about the t shirts on Tuesday. 2 days left for me...my anxiety has shot through the roof, with no logical reason why. I thought it came back the other day I was scared so I went to the doctor they said relax you have a cold and that was confirmed with both my children got sick....ugggg I think I am paranoid...LOL
Nice to hear BREE that you are doing so well
Go Royals
Scout
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Scout,
One of the harvoni sides, including post tx (for me), is an exacerbation of anxiety attacks. They are seemingly for no reason and come like a wave. It is like suddenly an insecure slightly paranoid feeling comes over you, and though you intellectually know that there is no reason, the bad feeling just persists...then eventually goes and you can hardly believe that you had been that way just an hour prior. Weird...do you get that? And I am not talking about typical anxiety attacks...this is different.
Also, has anyone in EOT phase still peeing all the bloody time regardless of H2O intake? Good grief batman...
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Yes Beto,,,that is exactly what I meant. One hour I am questioning everything and then two hours later I think, why am I questioning this. I have also been having what I would call anxiety dreams, that I am dying. This has all come about in the last week. It's very strange
Go Royals
Scout
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I wonder if some of this is the culmination of all of those years of doubt and dissociation and now we are strong enough to digest. Strange brew this hep c survival...
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Yes to the crazy, vivid dreams! Dang, it's getting to the point where I feel like I'm living a double life. When I wake up I remember every detail. Lots and lots of nostalgia in them. Dreaming about people I haven't seen in 30 years, etc. :o
You've got this, Cal. I'm glad you found that study. Very promising, though I think it's unlikely you'll need it. Plan B's are nice to have in your back pocket, tho. ;)
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Hi Bree,
Thanks for the encouragement. It's so good to hear you are doing so well. Keep on keeping on my friend! Cal :)
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Hi scout,
Sounds like drug induced or EOT anxiety. Whilst were on the drugs, we are safe, it's after, that limbo parallel world we go to for 12 weeks, which is anxiety producing. I'm scared of EOT!
Looking forward to the t.shirts and wearing with pride 8)
Yeah I'll make it! Cal :)
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Beto,
Anxiety is awful, it's a sneaky little Venus fly trap that tricks you before you have time to think, hang on thing ain't right?
Ribas cause anxiety. I hate it, but use mindfulness to see me through. It's all for a good cause! Cal :)
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Beto,
Yes years of doubt and disassociation have yo go somewhere. We've kept in compartmentalised for so long so we could live day to day and now those walls a falling away. Interesting what journey post tx will take us on after all these yeRs. That's what I'm looking forward to, no barriers. Cal :-*
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Else,
Yes the dreams on this have been a bizarre ride. Most if mine are nightmares. I think once again, years of being defined or defining myself as a hepper, has left some psychological luggage at my station. Cal :)
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We've kept in compartmentalised for so long so we could live day to day and now those walls a falling away. Interesting what journey post tx will take us on after all these yeRs. That's what I'm looking forward to, no barriers. Cal :-*
[/quote]
well said CalPal...very similar to PTSD. There is a book "In an unspoken voice" and another "Walking the Tiger" by Peter Levine. It is a fresh look at trauma recovery, however, there are a lot of parallels I'm finding with respect to the emotional/Psychological/spiritual side of all of this sudden recovery from long term illness. Your observation of compartmentalizing...rings a bell. That's what trauma victims do. Of course many of us have had our share of trauma in our lives as well.
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Beto,
Yes years of doubt and disassociation have yo go somewhere. We've kept in compartmentalised for so long so we could live day to day and now those walls a falling away. Interesting what journey post tx will take us on after all these yeRs. That's what I'm looking forward to, no barriers. Cal :-*
Cal, I like how you put that. I find myself wondering...now what do I do? I have lived with walls in every aspect of my life...with myself, friends, family, coworkers....I haven't been able to be myself because I have a secret running my life. Even at home, I still hide my toothbrush and my razors from my children.
I don't know if I even can be normal anymore. I think it's gonna take some work
Scout
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Hi Beto and Scout,
Yes it does has parallels to PTSD. In fact I think that many of us would fit the DSM V definition of it. There has also been studies (which coincidentally I worked on as a medical researcher) about PTSD and living with any long term illness let alone one with the stigma we bear. Living with a virus that can kill you and make you very sick and not being able to tell anyone (except those of trust) is an enormous psychological burden. Tx is gruelling and we have to hide that as well. The truth equals judgement, fear, ostracising , being talked about.
You know in your mind that you are co existing in a world of healthy people and the burden of truth makes you feel not as worthy somehow. Even though intellectually we know it's crap, we are equal, the stigma is too entrenched and the burden of being judged as not worthy is real not imagined.
A virus that is contagious is cause for fear in others, I don't blame them. I just don't want to be treated like a second class citizen or an object of fear. That alone makes me perpetuate the omitting of truth.
It can be contained psychologically by putting it in a compartment, which is there but contained so you can live as normal life as is possible, with a time bomb ticking inside you.
Now we are faced with a new truth of no HCV and yes Scout, it is going to take some big adjustments. I too hide my toothbrush and diligently put my razor in a plastic bad on the bag of the drawer. We won't have to do those entrenched rituals anymore. We'll find new ones and in time they'll become habits as well. But you raise an important point about moving forward and Bree called it unhooking from old familiar habits. Those barriers we used for self preservation are no longer necessary.
I think Scout that you can view it as an adventure, a voyage of discovery and yes it's going to take some work. Especially because we have been the host for this virus and therefore there is a symbiotic relationship going on and that will end like any other relationship and new horizons appear before us.
It's a bit exciting/scary 8) Cal
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Very insightful dialogue from everyone. As disease free as I feel I am right now in regards to Hepc, I was watching my 2 year old granddaughter today and was cutting my nails on the porch while she played outside. She picked up my nail cutter and I had a moment of fear. Hmmm. We made cupcakes and we both licked the spoons and I have to admit (and I know better) wondering if that was a smart idea.
I think my thoughts around it are heightened more this past year due to getting and being entrenched in treatment. Before that, I was just doing life, quietly knowing what I was dealing with. Didn't talk about it much even to close friends.
I have to say I feel a new freedom I haven't felt in a very long time. Like good things are happening and going to happen. I really really like it, and definitely, I am unhooking one step at a time... sometimes in leaps in bounds! Life is and can be amazing. And we deserve it!
-
Agree, Bree! That was beautifully put, Cal. Yes, scary and exciting. An existential crisis doesn't have to be a bad thing. But it's shaping up to be a big thing. ???
-
One day left! I am almost thinking of setting my alarm clock for the middle of the night just to get it over with! LOL
Go Royals!!!!!
Scout
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Dang Scout, that is a low ALT yo!!! You got this...not sure if you are talking a Royals win or 12 week UD. :)
Cal...yes nicely put. I am sure that the post treatment question will be debated long after we have moved on to SVR and excellent future health. The road there may have its bumps, but it is all worth it. I think what we can all take away from this experience is that homeostasis and equilibrium are a titter totter process and not something that just happens. Our hearts and spirits are tested and skewed from all the years of living a disguise of normal for the folks that need us to be normal and strong.
peace all
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Go Scout!!! :D
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hey scout,
look at it this way...Royals could lose...but you are sure to win ;)
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One day left! I am almost thinking of setting my alarm clock for the middle of the night just to get it over with! LOL
Go Royals!!!!!
Scout
Hey Scout... post treatment rocks!!! (Might take a little adjusting first... but come on in, the water is fine! 8)
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Bree,
Your post excites me! He have such a thirst for life now, it's our new contagious!!
I did exactly what you did last night. I cut myself on a falling to bits wire strainer. I immediately went into Hep Mode, sealed the are, checked would check strainer, checked surrounds and threw it out! I couldn't have my son, who uses it fir 2 min noodles all the time, use it again! I,m UND but still don't trust it. I hope SVR will convince me. I,m sure it will.
Cal
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HimElse,
Thank you, but is was just me rambling. I won't blame the ribas !
Yes it's a big thing, but it's an adventure and I'm definitely due for one of those! Cal :)
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Scout,
In Oz we say " go you good thing " . You're excitement nearly hit me in the face! Cal :)
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Hi Beto,
Yes homeostasis is a tricky balancing act. It's never to late to look after yourself and recover physically and mentally from this experience. well said "living a disguise of normal for the folks who need us to be normal and strong" that's about it. Cal 8)
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Well said all...
Our immune system's kicking back into "normal" gear should be interesting 8)
Looking forward to it!!!
Marianne
-
DONE!!!!!!
Scout
-
Good morning all.Cal I saw your post where you said you had a sore on your lip.When I went on that Peg Intron treatment years ago my mouth broke out something terrible.I use to get fever blisters and what happened was interferon was killing that virus(while trying to kill me) and I haven't had one since.Just a thought.
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I just saw you post Scoutdoy.Well done and congrats.I can't wait until I can say that.Cheers
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Thanks Bill,,,,Going for my blood test tomorrow....I made it! Hopefully I get the good result and leave this beast in the dust!
Go Royals
Scout
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Don't worry because I'm sure you beat the monster.My question I do have for everyone is has anyone had problems with weight loss or appetite on this?I could stand to lose a few pounds but not 50.lol Damn I envy you people that are finished or finishing.
-
Bill, some people lose weight some people gain. Sorry, probably not what you wanted to hear. I was a loser, not much, about 10 lbs, but I really lost my appetite and I went and got a nutrition a drink supplement. Boost, very vanilla was the name. Make sure you drink lots of liquids.
Go Royals
Scout
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Congratulations Scout!!! 8) 8) 8) 8) 8)
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Thanks byebye....I hope the after tx goes smooth. I was lucky he did not suffer very many side effects during treatment and I didn't take RIBA. Woo woo I am pretty happy, might even go and buy a lottery ticket today
Go Royals
Scout
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My question I do have for everyone is has anyone had problems with weight loss or appetite on this?I could stand to lose a few pounds but not 50.lol Damn I envy you people that are finished or finishing.
Hi Bill
Welcome to another runaway thread that will never end :). I am a Harvoni person so, not sure if that has enough parallel with viekira sans riba. Anyway, I had this amazing appetite that has not relented 2 weeks post. Only gained about 5 pounds...but the good new is I felt good enough to work out. I posted about it a lot, but I never received a post that anyone else had the hunger thing. I did lose in the first 2 weeks...but likely most of that was water weight.
Scout...wooohooo! Now you can complain about EOT...tee hee
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Scout! You're headed for the other side!!! 8) 8) 8) Big congratulations!
Beto, I never thought to mention it but yes, being on treatment gave me my appetite back after at least six years, maybe longer. Appetite and then some! ;D Think Jabba the Hut. I've put on some weight but meh. It's moving into jacket and sweater weather here in the NW so who cares. :)
-
Those washboard abs are still down there...uhh...somewhere :)
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Thanks byebye....I hope the after tx goes smooth. I was lucky he did not suffer very many side effects during treatment and I didn't take RIBA. Woo woo I am pretty happy, might even go and buy a lottery ticket today
Go Royals
Scout
Hey Scout, Congratulations!!!! I think you will do great post treatment. After the first week adjustment due to miscellaneous factors, it's been pretty awesome for me!
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Re: Weight and appetite. I had periods of low appetite, mostly start of treatment and times I was ravenous! My theory was that the body was working so hard internally to rid the virus it needed fuel!
I lost 3 pounds but that's because I wanted to lose 5 and I was trying to not give in too much to the ravenous parts... but I ate if the situation called for it :)
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Hi all,
I lost 3 Ks (6 ilbs) in the first month but the second as the HB adjusted I got ravenous too. Put back on the 3 I lost. Wondering how the extra RIBA since last week is going to affect my weight again. I can't lose it again, I look like a skeleton. I look sick. At least if you have weight you look healthier. I reckon anyway. Cal :)
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Scout, Yes done day has arrived. Break on through to the other side!!!!!! Should be getting My EOT blood work back Tuesday. Hope Yours says Your viral load is lower than Whale Crap!!!! Happy for You!!!! HOW ABOUT THEM ROYAL? Lottery ticket for sure.
Beto, My six pack turned into a kegger about 30 years ago!!!LMFAO!
Here is to all the Happy Healthy Heppers out there, and to the ones who are not there yet-- God Speed on the road trip to it.
I STOPPED FIGHTING MY INNER DEMONS---- WE ARE ON THE SAME SIDE NOW!!!!
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Yes Tommy is back in action. Got the kegger visual thank you very much. So we got some EOTers brewin'. We are like spirits having transcended tx. Now we get bitch about EOT not being what we wanted..teehee.
Where does Tommy go when he disappears for a few weeks? We all been rattlin on so you have some reading material when you finally surface.
Welcome back kegger
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I was in My little dark rubber room for about a week after EOT, then about another week to catch up on all this reading crap ( oops O mean stuff ) You crazies have been posting. HEEEERRRRES TOMMY!!!! Whatever it is --- I didn't do it!!!!
Bill , I lost 10 lbs. during Tx., But I was trying to lose some. Hopefully I lose another 10-15 so I can get My kegger to lokks more like an 18 pack! Doubt very seriosly I'll get it back to a 12 pack!!! Much less a 6 pack!!!!ROTFLOL!!!!
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Hey tommy,
Royals are looking pretty good, but waiting to come back in the late innings is pretty stressful for a lot of folks here. We were just talking tonight about how many die hard fans have dam near had heart attacks the last few nights
Go Royals
Scout
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Tommy,
Nice they let you have day release from the rubber room. :-\hehe. Don't s are us pre EOTers with rubber room antics post tx! I have my own straight jacket thanks, it's floral. :-*cal
-
I've had my rubber man cave set up nicely for a very long time.I was just wondering about the weight thing.I know this isn't anything like the last treatment but my head is still in that one and probably will be forever.I dropped to 126 lbs on that one.There was only 1 left in my six pack.I called this morning to get my AST and ALT and they were 40-69.I couldn't believe it.I think have everything going for me this time.Hey what's that light at the end of the tunnel...
-
And for what it's worth I already had PTSD(Thank You Uncle Sam can I have another please...)and insomnia(I would like to thank Uncle Sam for that also)so I''m ahead of the game as far as those side affects go.
-
Bill, I used to think it was another train headed straight at Me!!!! Turns out. when I got to EOT a couple of weeks ago, it was all that bright light emitted by Bree!!!!
Man that was a radical weight drop to say the least. I could stand to lose another 20-25 lbs. for My health but I am not pushing it. Just trying to go with the flow and eat healthier and smaller portions.
Great that the Sx.'s aren't to bad for You. I had a rough time during Tx. and am having a few issues post EOT as well. I can't figure out why I had My mind set that I go in tomorrow for Lab results, Got to work this morning & looked at My calendar!!! It's TODAY!!!! Your number should keep on dropping just wait & see! Good luck & Godspeed to You!!!!!!
GONE CRAZY-----BE BACK IN FIVE!
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Good luck on your labs Slats.I'm sure they'll come out the negative for you.I could stand to lose 20lbs myself but it will come in time.In the mean time I'm going to avoid tunnels filled with trains,trucks,buses,and cows.Cheers
-
Tommy, you crack me up. Good luck on getting your good news!
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Hi bill,
Sorry you already have PTSD. You poor thing. Then HCV on top...great. How much can a koala bear? You are doing good, with an excellent numbers drop already. You'll be right. Cal :)
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Tommy,
You're the bomb. Cal 8)
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WARNING: HIJACKING IN PROGRESS!!!! UNDETECTED-UNDETECTED UNDETECTED!!!!!!!
DANGER : BEWARE OF HAPPY DANCERS!!! DO NOT ATTEMPT TO INTERFERE!!!JUST JOIN IN THE FESTIVITIES!!! SPONTANEOUS AWESOME SMILES AND DANCES ARE PREDICTED FOR THE FORSEEABLE FUTURE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Yea for happy dances and bright lights (thank you Tommy)!!!
Bill T, I did the previous treatment too... no comparison, go in believing and expecting the best every step of the way (even if there is a dip here and there).
Cal, I got the book from the library today, The Happiness Trap. Thank you for suggesting it. It already won me over as it has an endorsement from Martha Beck (one of my heroes) on the front cover. I plan to read it when I'm on Oahu next week for two days.
-
Tommy, I started a virtual conga line on another thread for you, come on the party awaits! Cal 8)
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Oh Bree,
I'm so happy you got the book. Russ Harris is an Australian writer. You will love it and no doubt we shall see some of it's wisdoms in your new thread as you adopt them and imbibe them. They are my internal dialogue, that other voice, when I am not doing too well at it on my own. Cal :)
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Cal, keeping the good stuff coming in... so the crap doesn't gain to much ground... that's the plan! 8)
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A cunning plan Baldrick! 8)
-
Scout,
One of the harvoni sides, including post tx (for me), is an exacerbation of anxiety attacks. They are seemingly for no reason and come like a wave. It is like suddenly an insecure slightly paranoid feeling comes over you, and though you intellectually know that there is no reason, the bad feeling just persists...then eventually goes and you can hardly believe that you had been that way just an hour prior. Weird...do you get that? And I am not talking about typical anxiety attacks...this is different.
.
don't have the peeing problem, but basically feel like I am losing my mind. Way too much hyper-ness and anxiety, that comes in waves. The only thing that gives me comfort is it is exactly theway I felt after my 1st tx and I came out of that...suddenly just woke up one day and everything was back to normal...it was so weird. Not gradual at all. Looking forward to that day again.
dm
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DM,
Yuk anxiety, horrible stuff. You are strong and you know it is something to be endured until it dissipates. Then you'll be you again! Cal :)
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DM,
Yuk anxiety, horrible stuff. You are strong and you know it is something to be endured until it dissipates. Then you'll be you again! Cal :)
thanks Cal.
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Hang tough Drummer.Just keep remembering this isn't forever and it's better than the alternative.
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Hang tough Drummer.Just keep remembering this isn't forever and it's better than the alternative.
Yup.
thanks Bill.
dm
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So glad you're undetected, DM. And that you know that the hibbie-jeebies will pass. At least it's a devil you know.
For YOU Tommy... (and for everyone else)
https://www.youtube.com/watch?v=fJ_3IWGocP8 ;D
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Hey DM,
I know exactly, precisely, how you feel. Very very bad feeling I hope you can get to the Doc n get some help there.
I'm so sorry you're going through this.
Else,
Awesome :D
Marianne
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Awesome :D
Marianne
Embarrassed to say how many times I've watched it. For one, it's a cross-section just like the HCV community.
And it's got yer pole-dancing, yer congo line and my person favorite... the very last second or two where the banker-looking dude is finally gettin' his freak on! ;D Even a suit can't stem the tide of joy forever! 8)
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So glad you're undetected, DM. And that you know that the hibbie-jeebies will pass. At least it's a devil you know.
For YOU Tommy... (and for everyone else)
https://www.youtube.com/watch?v=fJ_3IWGocP8 ;D
Yo, that's us Yall!!!! 8)
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Thanks Marianne and Else.
It is a devil I know, and am in a hurry for him to leave.
I keep thinking, ... any day I'm going to wake up and be back to normal.
I know it will happen.
dm
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How are you hangin Cal? It still hasn't sunk in that this is over for me, and hopefully for the rest of my life.
Go Royals
Scout
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Oh Else,
I am going to list the dance party in the sub way on my Australian Firum. It's the same in a train if bus here. Brilliant! Love it. Cal 8)
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SM,
Have you used Mindfulness to cope with anxiety lashings? Bree got the book I recommended to her on it. I use it daily. So do my two sons who have anxiety disorders. The Happiness Trap by Russ Harris, you can get it cheaply on the Book Depository. It truly helps. There's also a free app called Smiling Mind. Lots of mindfulness exercises which are especially good for at night when you can't sleep as well. Cal :-*
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That's DM nit SM sorry .
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HinScout,
I'm ok thanks.
I'm going away to Noosa tomorrow for a holiday, a few days anyway, with a girlfriend. I'll be off line till I get back.
I have cold sores and RIBA rash everywhere so I am a real catch at the moment! That extra RIBA us doing it's job if running me down. I see the FP next week, so I'll get a blood test to see my HB.
Tomorrow will be week 9! It's a happening thang!
Yes scout you are through with HCV now. A few more months and you'll close the chapter on that part if your life fir ever. You go girl :-\cal
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Hi Cal,I believe I posted this before.When I was on the Pegintron and riba treatment my mouth broke out into one big cold sore.I haven't had one since.The only thing I can think is that these meds are killing more viruses than just the HCV.Just letting you know what happened to me.Enjoy your time away.
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Best yogurt I've ever eaten comes from Noosa. Rhubarb/strawberry. Hmmm. So it's a place. The more you know... :)
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Hi Bill,
I think Riba are an immunosuppressant? Form memory. I think that's my. That and HB being low makes you vulnerable to infection. Not nice though are they? Cal :)
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Hi Else,
Yes Noosa is about 1hr 1/2 from me. Its a beach resort. Very nice, beautiful white sandy beaches. You follow a trail for about 30 mins and you come to a nudist beach! It used to be quite hippie alternative but developers have got in and theres lots of rich people in huge homes right on the beaches. Our own ex PM Kev Rudd has a place there. Lifestyles of the rich and famous! But also a great family spot as there's a river there too, for fishing and boating. Cal 8)
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Again great news Tommy!! Proud o' ya
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I'll see you good folk when I'm back from Noosa. Stay kicking and gouging! Cal :-*
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Just googled Noosa. Looks beautiful Cal. Safe travels... we will keep the light on for ya.
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Beto...did you get your EOT blood test yet?
Scout
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No...I will have my blood drawn Monday most likely. I am traveling for business right now. I usually get results pretty fast, like 4 -5 days. So pins n needles once again. Funny, not matter how many folks report UD post tx, I still have trouble thinking "I've got this"
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Beto, I had my blood test done yesterday..I kind of feel the same way
Scout
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Else, Good Video. Definitely a diverse cross section! Loved it. For some reason My mind does not co-relate Your avatar with You. It does not compute!!!! LOL!!
Scout, Waiting with baited breath for Your results. Talk about an adrenaline rush when You actually read NON-DETECTED LESS THAN-----. Go Royals!! But only after Scout!!!
Beto, Thanx, waiting for Your results also. That little freakin' monster in Your brain just won't let You give it up!!!! I guess it'll take some time! Still have the doubts even after getting the results in My grubby mitts.
Cal, Have a wonderful time!!!! You most definitely deserve the time off. Have fun, let it all hang out!!! LOL!!
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Big peace to you both, Scout and Beto. Nothing but good news is on its way. 8)
LOL about my avatar, Tommy. So I don't seem like an angry young rapper to you? I was just having one of those days. ;)
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Hey Tommy some of us might surprise you.I'm 60 and love Trance.lol
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OK, I'm just gonna put this out there. I will listen to just about any kind of music out there as long as I have an idea of what it is about. Well I might have to draw the line at Techno and Disco!!!!!! LOL. It's funny to hear what My kids listen to. One is country & western, one is into 60's & 70's rock & roll ( the youngest 22 yrs.old ) , and one will listen to any thing that make o sound. It flips Me out when I hop into an elevator & hear Muzak renditions of The Door, Led Zepplin, ETC. ETC. At 59 I just think , why the hell get up & change the station???? Then I REALIZE THE REMOTE IS SITTING RIGHT THERE!!!!!!!!
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BTW, Not much surprises Me any more.
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I listen too it all.My line is at rap and hip hop.I just can't do it.
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I can't allow myself to think I've got this until I know for sure. So at the moment my thinking and language is full of indefinites. It looks like ... it seems possible ... Chances are ...
5 weeks will tell us.
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I have to keep believing I'm cured... I needed to do that during treatment to keep it positive and I need to do it now. All evidence points to it, blood work, how I feel, etc. plus for me it's more fun that way. Do doubts creep in, absolutely, and I try to move on to believing I'm cured. I never felt that way with the previous treatment.
I just walked several miles with my friend today... 4 days in a row... before I would have had to take rest day after 2 days. She said today she noticed my stamina was improving.
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Cal, we're keeping your space warm for you until you get back... 8)
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The FDA just posted a warning about Viekira Pak and Technivie: http://www.fda.gov/Drugs/DrugSafety/ucm468634.htm
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Just got my EOT results....NOT DETECTED!!!!!! AST 15 ALT 9
Go ROYALS
Scout
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Spectacular, Scout! 8)
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GREAT SCOUT, UNDETECTED AND LOW LIVER PANEL NUMBERS TO BOOT!!!! That is a real cause for celebration. Just make sure Your toes are out of the way. If I don't step on them virtually , I'll get them with My words!!!!!! LOL!
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Thanks, yes it feels great. My hep doctor also told me that in their office they have never had anyone test undetected 3 times and then relapse. He told me to put the anxiety away waiting for the 12 week test!! That dos help...I am going to go buy a lottery ticket today. I don't normally waste my money on that sort of stuff, but what the hell
Go Royals
Scout
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Don't think of it as a waste. More like a frivolous expenditure to celebrate un-detected. If You win though---- I get half for talking You in to it!!!! HAHAHAHA!!!
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I will look you up if I win tommy.
Scout
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This is too good. We are sitting here chatting on two different threads at the same time!!!!
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LOL
Scout
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Congrats on your 12-week UND Scout! & good luck on the lottery ticket. :)
kim
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Hooray Scout!!!
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Just got my EOT results....NOT DETECTED!!!!!! AST 15 ALT 9
Go ROYALS
Scout
Congrats on this thread too!!! 8)
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Hi Y'all, (love saying that!)
Noosa was beautiful but we has crap weather, but still managed to have loads of fun. Thanks for keeping the lights on and keeping the thread warm for me!
Hope you're all ok. I'll check see what's going down. Cal :)
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Hi Phily,
5 weeks to go to the last shout. Wow, that seemed to go fast, but I'm sure you wouldn't agree! I am dreading the 12 week wait personally. Cal :)
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Tommy,
Thanks, it went too quick. I need another holiday already! Cal :)
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Scout,
Congrats on EOT UND. Great low numbers there! Cal :) :)
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Scout,
Come ad see me if you win! Cal :)
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FDA Warning - http://www.fda.gov/Drugs/DrugSafety/ucm468634.htm on Vierkira Pak released yesterday
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Hi all,
I am experiencing liver pain, it's been going on intermittently since yesterday. I had it before tx but never this much. I also had it a lot in week one and two. Is this cause for concern? I'm week 10. Cal :-\
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Just stay calm and call your treating nurse on Monday. My liver is much worse than yours and I'm still here.
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I agree with Philadelphia to call Monday Cal.Hopefully it will subside before then.I hope so since you only have 2 weeks left.I got my butt kicked yesterday with some sides but I feel much better today.Nobody said this was going to be easy but it beats the Peg treatment and the alternative.
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Cal, thanks, and I did buy the lottery ticket, they draw the numbers tonight. My Royals made it to the World Series. I am trying to get tickets to one of the games so I can take a giant sign that says I SLAYED the DRAGON! Tickets are soooo expensive. 300 to 400 each... I Love the royals, but not that much. Do you think maybe you have been doing too much and may have pulled a muscle or something? I went back to the doctor a few weeks ago paranoid that the virus came back...and he said relax...you caught a cold...it was confirmed when my kids got sick a few days later, and then my tests came back undetected. Your soooo close to finishing...hang in there
Go Royals
Scout
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Congrats on numbers and Royals. Yes I get the feeling of being a bit concerned when you don't feel right...I get a little paranoid. I will not know for about a week. My last test was back at week nine and change. Now at 3 weeks EOT I have the heebie jeebies.
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Phily and Bill,
Thanks. I see my GP Tuesday and will check with her. It is subsiding, I think. You never know what you're gonna...."life is like a box of chocolates..."
Cal :)
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Hi. scout,
Yes I have been doing too much. As I am probably getting another month. TBA. I was concerned it was still fighting the virus in my liver and that it should be done with the heavily artillery by now and just doing stealth bombings where needed. Good luck with that ticket, you've got all the luck in the world now! Cal :).
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Good luck with the Royals, Scout. As the parent of a quasi Canadian I feel obliged to root for the Blue Jays, but I hope they are all fantastic games. I'm heading to Havana in January and hope to see at least one game down there.
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Hi all,
I am experiencing liver pain, it's been going on intermittently since yesterday. I had it before tx but never this much. I also had it a lot in week one and two. Is this cause for concern? I'm week 10. Cal :-\
Cal, I had liver pain at the beginning of treatment and again toward the end (last week or so). I was concerned enough to post about it and someone else said they had it too at the end of treatment and they were UND too.
Also, when I got stressed out, sometimes I would feel it in my liver.
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Do you know until two years ago I could not reliably tell you which side of my body my liver was on? I still struggle unless I can picture myself having a liver ultrasound.
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Not. Very. Smart.
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Do you know until two years ago I could not reliably tell you which side of my body my liver was on? I still struggle unless I can picture myself having a liver ultrasound.
You are plenty smart Philly. Are you right or left handed? That's how I remember. My right hand, liver on the right.
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Cal, I had liver pain at the beginning of treatment and again toward the end (last week or so). I was concerned enough to post about it and someone else said they had it too at the end of treatment and they were UND too.
Also, when I got stressed out, sometimes I would feel it in my liver.
Oh thanks Bree,
That really eases my mind. I am still having pain, but if you had it about the same times I did, I feel much better about it. Cal :)
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Re the side of the liver,
I always check it out against a picture of the liver to be sure! ::)
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Cal, I had liver pain at the beginning of treatment and again toward the end (last week or so). I was concerned enough to post about it and someone else said they had it too at the end of treatment and they were UND too.
Also, when I got stressed out, sometimes I would feel it in my liver.
I had flank soreness in liver area last week of tx. It is concerning for sure. But I had been UND for weeks by then, and was still UND at EOT. So it had nothing to do with Hep C. Now at 12 weeks post-tx, I have started to have some flank soreness again in liver area. But I think it is the regimen of vitamin and mineral supplements I have been taking since EOT when I discovered I was low in iron, B-12 and D. So I backed off on the Vit D, and flank soreness has nearly disappeared. May or may not be related. But I know in the past when I had Hep C, Vit D supps would give me flank soreness after a certain period of daily usage.
kim
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Wow Kim,
That's really interesting. I take Vit D daily. I wonder if I should back off for a bit? Will experiment, cal :-\
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Wow Kim,
That's really interesting. I take Vit D daily. I wonder if I should back off for a bit? Will experiment, cal :-\
It's worth experimenting with that, Cal. See if liver pain/soreness goes away. I wasn't happy about stopping my Vit D. I felt good about what it was doing for me. Also, studies have shown that people most affected by anemia while on ribavirin also are low in Vitamin D. So I thought the D might help me recover from my riba anemia. Also thought it might help strengthen my bones. But I don't want anything making my liver sore. Not when I am focusing solely on healing it.
kim :)
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Hi Kim,
I used to be low as most HCV sufferers are, and so went on supplements. But I will experiment with it, it's worth a try. I may have too much. I might ask my GP for a Vit D profile test. I have good Vit D and ribas have floored me! Cal
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If nobody else is going to ask then I am.What the heck is a quasi Canuck Philadelphia? :)
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Cal,Evidently the Viekira is a mess with other drugs and supplements so you need to be careful.My doctor wants to know everything I'm taking before I take it.The problem is these meds are so new I think they're still working on a very very long list of do's and don't.I'm glad things let up a bit for you.Cheers
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I was curious about that myself bill
Go ROYALS
Scout
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If nobody else is going to ask then I am.What the heck is a quasi Canuck Philadelphia? :)
Tommy asked the question sometime back, but EOT memory laps I guess...I don't remember the answer...Philly? Whats the deal with your site name again enquiring minds need to know.
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Quasi Canuck = Almost Canadian
My daughter currently lives in Vancouver.
I'm Australian, she's Australian. Philadelphia is the name of one of my horses. Although I have been through Philadelphia on a train from NYC to DC.
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Hi Bill and Scout,
My Doctor knows I'm taking it? Cal :)
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I think every Aussie I've ever met owned a horse Philadelphia.Don't you all have cows or something else down there?I know they hard to ride at first but after you break them in they're not bad and you get use to it,and if they break their leg you can turn them into a nice dinner. :)
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Glad you got lots of good feedback and advice, Cal. :)
Hey Philly, I just got back from Vancouver last night. Vancouver in Washington State. Both Vacouvers are about equidistant from Seattle, north and south. So you always get to hear "Which one?". Geez, even our state name is confusing. "No, not that Washington." :P
Okay, I'm rambling...
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We do have cattle Bill, but most people eat them (sorry vegetarians). Some people ride them in rodeos but I would ride one by choice.
It's a bit of a myth that most people have horses. We are one of the most urbanized countries on earth! Not a lot of high density. Living but a lot of houses in the suburbs. I live out of a major regional center with a few acres to call my own. Enough to swear when a water pipe cracks in the bottom paddock, or enough to spend all day fixing an electric fence problem.
I have neighbors across the hwy but people around if I need them.
I've refined my horse numbers from nine to one so I'm pretty happy with that. Lots more money in the pocket.
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Cal, I am sure you said this before...but are you f4?
Scout
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Hi Scout,
No F0. Cal :)
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Hi Philadelphia,
I have a couple of lady friends from down under that have show horses.One actually moved here to Florida and brought hers with her.I rode almost every weekend growing up but I haven't in many years and I miss it.When I was living in Ireland people rode on the beaches.Now that I would love to do.
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Ok, good cal...I read an article today and was concerned for you but this regards f4 people...that's really good that your an f0
Scout
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Scout,
Thanks darling' do you mean the FDA warning? Cal :)
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Cal, I was....but thank goodness it doesn't apply to you,,I am now 9 days EOT...I had my follow up with the hep doctor. It went well, he laughed and said that my liver numbers were better than his...LOL
Go Royals
Scout
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Scout,
Thanks for worrying about me :) you are kind.
Now those numbers are just ludicrous! How can we aspire to those? Setting the bar to high with those too low numbers!!! Cal ;D
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Scout, your numbers are about as healthy as a liver gets!!!
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Else I know they say viral count and time don't make a determining factor to damage that HCV has done but at 14 million viral load and having this shit for 30 years I feel blessed with my AST/ALT numbers and biopsy numbers. I have felt so horrible (fatigue and joint pain) for so many years! Just the fact that I got approved for Harvoni by my insurance company with the condition my liver was in stuns me. I truly think that denying patients that are too healthy is criminal, and insurance should get the meds to people BEFORE their liver declines. I understand it's a $$$ issue. With the latest news on the viekira pak and heppers with f4 status, Gilead may just raise their prices again...
Go Royals
Scout
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We all agree scout,
F0's to F2's and have the best chance of overall outcome. However, it should not be a choice, everyone infected should get the med's, period. If there are immediate needs or a child infected I am all for letting them to the front of the line, but outright denying folks. We are all well aware of how this disease progresses and F0 could be an F1-2 a year or two from now. I have known of Harvoni type drugs hitting the studies for maybe 5 years. I am F4...4-5 years ago I may have been F3. Had it been available, and I had been cured I might be looking at F2 after a few years of liver improvement.
It is unprecedented what we are looking at. Not since antibiotics have we been able to see such dramatic drug results. Scout imagine if you had to wait another 2 years with a 14m viral load. You are looking now a AST/ALT scores that most non heppers don't see. That includes Teetotallers.
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Beto, I abolutely agree with you. Had you gotten the meds a few years ago, there is no telling what your liver scores could be, and how much improvement you would have already achieved. My best friend is an f2 right now but was f0 just 2 years ago. She is tanking fast, and suffering much worse symptoms than I had, and has been denied twice for medication. It angers me so much that I want to go to capital hill and put us side by side and ask "why is my life more valuable than hers?" I got the meds and she cannot!
Scout
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It is so inequitable there with medical services being a money making model. In Australia we've had some news on access.
It looks unlikely there will be an announcement before February 2016 ( generics access will increase) . All drugs recommended by the PBAC will be funded. So that's basically the ones available to you. So all geno types will be covered . There will be unrestricted access (no triage) and a co payment of $38.00.
It's good news but it is sitting with the House of Representatives now (our Government) and it was promised for December so people are unhappy. I hope to goodness they hurry this through, because we are in crisis. Access to generics is building fast. They cost about $3500.00. So not all can afford or are able to emotionally go that route. But we need them now. I think the HCV. Community will storm the Bastille if it doesn't happen.
What can your Government to to ensure equal access. I would. Be writing or speaking to my local member of parliament. There must be lobby groups there as well?,scout it's terrible your friend is suffering, I am so sorry. Cal
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Beto, I abolutely agree with you. Had you gotten the meds a few years ago, there is no telling what your liver scores could be, and how much improvement you would have already achieved. My best friend is an f2 right now but was f0 just 2 years ago. She is tanking fast, and suffering much worse symptoms than I had, and has been denied twice for medication. It angers me so much that I want to go to capital hill and put us side by side and ask "why is my life more valuable than hers?" I got the meds and she cannot!
Scout
Scout, please tell her to keep appealing!!! I was denied three times. It took the fourth attempt which put my case in front of an external (independent) reviewer that made all the difference.
I don't know if I would have done that (as almost everyone knows, it's so damn demoralizing to get those denials in the mail :() if I hadn't seen someone on this forum who was approved with a fibrosis score lower than mine and asked how she did it. She showed me it could be done. And I mean graciously but very specifically. Her cover letter, what was included in her final appeal, etc. And it worked!
Yes Big Pharma is run by psychopaths, and insurance companies aren't much better. But sorry, many doctors here in the U.S. are complicent. They are telling many Hep C patients to wait. They are telling Hep C patients that insurance companies won't approve Harvoni. It is just not true. The truth is they view it as a battle they are not compensated for engaging in. There is a big difference between "Harvoni is unobtainable" and "obtaining Harvoni for you does not fit our business model." If it is the latter, they need to say so. "Warehousing" patients? As if we are an asset to be stored for future exploitation in a friendlier business climate?
"You Can't Be Neutral on a Moving Train" - Howard Zinn
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Good on you Else,
I can feel your passion and anger. I never thought our battle would be the Insurance Companies in the U.S. and the Government in Australia. I thought we'd be battling our HCV with the orals. (Lots of assorted swear word, too rude to type in public!!! >:() Cal
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HI all,
Just an update on tx status. I'm on day 71, into my 10th week. The extra riba has hit me a bit, but I am adjusting to it. Bloods today and see Specialist next Thursday. Going to ask for a 12 week V/L even though I am probably doing an extra month. I only had a 2 week and I haven't seen UND yet. He assures me I am, I feel UND but I need to see it! Other than that coping OK.
Q and A with Hepatitis Qld and Hep Australia went really well. I've been asked to speak somewhere else as well! I got very passionate and they gave me the floor to beseech help for our community. Everything I said went down well, as I got applause at the end of it and people came up and thanked me for speaking on behalf of them or their clients. I am so glad I did it. I was so riba-ed up, I had to take a valium and pain killers to get there! I had an embarrassing riba cough and that scratchy voice from riba pharyngitis. So people saw what tx was like. Cal :)
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Cal
You go girl
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Thank you, Cal. People like you change the world.
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Good for you cal, can we stream the session so we can hear what you said to them?
Scout
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take it to them beeouches yo :)
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Cal, Good to hear. Looks like it got Your spirits up also! :o ;D LOL!! Hold Your head up, tuck Your chin in , grab hold of that rope , and give 'em full spurs until they come around to Your way of thinking! 8) Give 'em hell and then some! Do us all proud, I know You will!!! :) ;) :D ;D 8)
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Thank you Cali!
You're an extraordinarily strong and wonderful person.
Much much love,
Marianne
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Cal, that was amazing that you did that... Now who is the motivational speaker? Ha.
Speaking from experience and your heart always wins.
I can't think of anyone more kind, compassionate yet firm to deliver the message for those who need a voice. You are an asset to the world! Love, Bree
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You go Cal.The way I see it is that nobody should be denied regardless of if they're F0 or F4.We're talking about peoples lives.They wouldn't deny cancer treatment to somebody in any stage so why this?If we're willing to do what it takes and fight for our lives then money shouldn't be a factor in their decision.Ok,Rant over. :)
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Oh boy,
Thanks everyone for your encouragement and kindness. We are doing everything we can to get equitable access. If it goes through, I hope we can turn around the shame of our Government and be a Medical model for the world. Not that I care what people think of our Government ::) I think very little right now.
I gad a big RIBA over did it crash yesterday. I got so stressed, I am doing too much and I am on increased ribas, I must be mad. :P rest today. Cal :D
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God bless you Cali girl! I know just how awful this was for you already. Bless you with strength, courage, if not joy, at least a bit of laughter and lots and lots of hugs, love and help from those wonderful minions of yours! :D
<3 Marianne
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Thanks. Marianne,
You're a real pal. Thank you for caring. Cal :)
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Hi all,
I have a new symptom it's been developing over the last week. I have pain. Sharp and prolonged in seemingly random places. Some are joint but most are in the bone? Anyone else experienced this? If course hoping it passes but also worried it's RIBA. I was also thinking that the immune system could be attacking itself, as I have auto immune issues?what do you think? Cal :-\
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symptoms can be so odd and varied. I should probably keep quiet cuz I'm always speculating. Could be any of the things you mentioned. My wife used to get the symptoms you are describing. She had them for most of her life. They were explained as strong, sharp pain in the joints that would move around her body. She did have tests that indicated her immune system was a bit hyper and that those and other stuff she had going on could have been auto immune. Have you ever had a C-reactive protein test or, any kind of auto immune activity tests done? Then, the meds can cause all sorts of things. As has been reiterated on this forum umpteen times, our immune systems are suddenly operating in a body now devoid of hep. It had it's hands full and then in a blink...virus gone...or very diminished. Just sayin'. You've had a heck of a go Cal...pulling for you.
I'm wondering if anyone has had bleeding or pour clotting of blood after tx. I just had oral surgery and have had bleeding issues. My platelets are perfect based on a CBC I had the day before. Weird....scary halloween chit...
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Thanks Beto,
Yeah I have a raft of auto immune issues and antibodies for just about everything! I think I mentioned I get my thyroid removed ASAP after tx. I think your hypothesis if the lonely immune system looking fir something to do fits well, along the lines I was thinking. I'll just keep moving and shaking ::)cal
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Cal , it's amazing what happens to the human body when the immune system goes wacky. I personally think that the HCV meds weaken our immune systems a lot and make it go a little crazy. I am trying to do things to boost my immune system since the EOT. Have no idea if it is true or not. One thing I do know is during treatment I lost my appetite and was experiencing some vision issues. Nothing major, but since treatment ended my vision went back to normal and my appetite is out of control. I love to eat so I am enjoying that part...lol...have put on 8 pounds in 13 days! Now I am back to normal weight. Who knows what is or isn't related to HCV or the treatment itself. It's a crap shoot. Hopefully when you get done with treatment your immune system will bounce back. One can hope anyway!
Go Royals
Scout
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Hey Guys, My two cents! The extremely strong antivirals we have been taking actually gives the immune system a break. But being a workaholic, it stays in hyper mode because that is what it has known basically forever because of the virus! It attacks any little thing that it sees as a threat because it has to do something. It never takes time off,takes a vacation, or even takes a break. Not to mention the different Meds. we are taking. Especially Ribavarin. Then there is the autoimmune issues and other health problems We have been ignoring or don't even know that We have!!!!!!One needs to take into account the OTC Meds. and supplements also. There are way to many variables to take into account, it boggles the mind!!! Don't forget diet, environmental factors, cleaning products, ETC.ETC. So many things that We take for granted that affect our very being. But, that is just My two cents.
LIKE MY DAD USED TO TELL ME ALL THE TIME, USE YOUR HEAD FOR MORE THAN JUST A HAT RACK. YOU WOULD BE SURPRISED WHAT IT CAN DO FOR YOU 8) 8) 8)
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Cal , it's amazing what happens to the human body when the immune system goes wacky. I personally think that the HCV meds weaken our immune systems a lot and make it go a little crazy. I am trying to do things to boost my immune system since the EOT. Have no idea if it is true or not. One thing I do know is during treatment I lost my appetite and was experiencing some vision issues. Nothing major, but since treatment ended my vision went back to normal and my appetite is out of control. I love to eat so I am enjoying that part...lol...have put on 8 pounds in 13 days! Now I am back to normal weight. Who knows what is or isn't related to HCV or the treatment itself. It's a crap shoot. Hopefully when you get done with treatment your immune system will bounce back. One can hope anyway!
Hi Scout,
Like Tommy said the immune system has been a workaholic all these years and is just hovering....... My friend who txed and cleared on ifn and ribas was put on steroids for 4 months post tx because her immune system was attacking her bones! If worked. I won't hesitate to see my immunologist and ask for some assistance. BTW I am eating like crazy! I don't know why??? I haven't finished tx yet! Cal :)
Go Royals
Scout
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Interesting what Tommy said about cleaning products and environmental. I got sick a couple of times after doing some cleaning (maybe my body hates it;).... once during treatment and then this week I painted a wall on separate days and had headaches and felt sick for days. I also had a PDT (blue light photo-dynamic treatment on my face for sun damage). Between the paint and the blue light I've been feeling awful.... so much so it scared me.
I woke up this week in the middle of the night with leg cramps and a jabbing pain in the top of my right foot. It went away but, whoa. My nurse practitioner friend has me on magnesium and trace minerals which helps. She recommends boron too.
The other thing that I've noticed is that my eyes look a little like road maps. I had a burst blood vessel during treatment (was told not related although never happened before) and now the blood vessels are slightly enlarged. My eyes are whiter (not an off color) but those red eyes are strange. I'm going to see my internist this week. Pretty sure all of this is body reactions post treatment. Nothing life altering but a bit scary.
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Damn, more references about food. I am going to gain that 10 Lbs. I lost right back. AND, the holidays are coming up TOO! I guess I won't be making any of My low calorie Pecan Pie this Year, ROTFLOL!!!!! Think I'll go eat some Halloween candy. Since the weather was so bad here I only had about a dozen kids Trick Or Treating this Year. Damn there is a butt load of candy left. I'm sure it is all low calorie just like My pecan Pie ::) ::) ::) NOT!!!!
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I LOVE pecan pie!!! Can't wait till Thanksgiving to get some.
I didn't have one trick or treater. The kids grew up. I had those little containers of organic apple sauce if some showed up. Maybe that's why... don't go to that house, they will give you something healthy! ha.
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Bree,
Sounds like post tx stuff, I am having the shooting pains now. Take all the magnesium and supps, doing everything you can get back to homeostasis. DOn't worry this is normal stuff my darling friend. Cal :)
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Bree, I seem to be having the leg cramps and pains more so now post Tx. also. Never really had them before unless it was after some strenuous Hiking at My place out west. Climbing in & out of the canyons checking out fossils in the rocks and tracking animal sign. I am starting back up on My supplements again. Checking out correct amount of Potassium and Magnesium and any contraindications that go with them. I usually take a lot of Vit. C , so Calcium-Magnesium is a given as Vit. C leeches Calcium. And smoking takes a lot of Vit. C out of Your system too. Boron???? I have to check into that.Going to set up visit to G.P. to get an overall check up and physical as well as address some issues I have been ignoring for some time now. Going to ask him and G.I. about trace minerals and such. I have not been to this G.P. before, but he comes highly recommended. He was one of the top Trauma Guys next door at the Hospital for years. I have been told that He is versed in Eastern Medicine as well as highly trained in Western Medicine and has no aversion to herbals & supplements either. He is also trained in Acupuncture and Acupressure treatment as well.
BTW, nobody else eats the pie so , IT IS MINE , ALL MINE!!! LOL! Do You think You are reacting to the chemical or are You allergic to the work? Or both? :-\ :P ??? :o :D
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Okay, maybe I'm reading too fast or my vision is a bit wonky right now. But when I was reading your post, I thought you said, "Vit. C, leeches, Calcium". :o
I'm all, "whoa there, Cowboy. Let's hold off on the leeches for a while." :o ;D
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Thanks Cal!
Tommy check out ConcenTrace Trace Mineral Drops (by Trace Minerals Research) on Amazon. Taste yucky but I'm desperate enough to drink a little mixed with water or disguise it in things.
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HMMM, Blood letting for high iron issues!!! Never thought about that one. Back to the Dark Ages once more ;) :-\, Hell I'll try anything once , and the good stuff repeatedly. WAIT, hold up a minute! if My memory serves Me correctly, that is what got Me INTO this predicament in the first place ;D ;D ;D ;D ;D
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Bree, what about the last sentence of My post? :) :) :) :)
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Bree, what about the last sentence of My post? :) :) :) :)
Definitely allergic to both :) 8)
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And you have to share the pie! 8)
I grew up in the south, so pecan pie was a part of my lifestyle. When I was back visiting a couple of years ago, I bought a pie and ate the whole thing! (Not in one sitting but I had it with breakfast lunch and dinner for two days). Warmed with ice cream on top! so there!
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How in Hell am I supposed to eat healthy when all these references of comfort food keep popping up?
Re.: The pie sharing!!! Have You ever watched Stir Crazy with Gene Wilder and Richard Pryor? The big guy Grossberger when he was eating & Gene walked up to him? He put His arms over His food & started growling at Gene when He got close to Him. THAT IS ME WITH PECAN PIE!!!! Especially when I made it!!!! :P :P :P :P
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For You!!! I will make an exception though :)
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Yea, I go for healthy but not perfect at it. I haven't seen that one but one of my favorite movies is Gene Wilder and Richard Pryor in Silver Streak.
Have a great day yall!
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If you are taking vita C it is usually buffered with calcium and magnesium.
Yes Tommy, best way to deal with iron overload (on one of the best ways) is giving blood. Since nobody wants our blood, phlebotomies (blood letting) are the ticket if too high. Probably, back when they bled folks, they were gaining at least some benefits. A male 40 or over years old that drinks and eats a lot of red meat might well have high blood iron that was affecting his health. The liver would be one of the main organs to suffer. I have said before, harvoni seemed to lower mine quite a bit. Plebs I would think would be contraindicated on and EOT of these meds...maybe someone knows the answer. Many alcoholics have high ferritin. BTW am not advocating them here, just sharing info.
I had plebs over the years because of High ferritin. I always noted a drop in AST/ALT after getting levels down.
Pecan pie is also know as vitamin PP right? :)
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I love how our posts go all over the place from scientific breakthroughs, Dr.'s lack of knowledge (or concern) of them, to just being our silly, goofy pea-can pie loving selves!
Else, bahaaaa! Leeches! You know Tommy meant a good ole solid electro-shock treatment followed by the leeches to get the iron out ;D Oy to the VAY! :D
Because I've been reading so much on the peripheral neuropathy, I've ran into some really interesting new research on how the anti-nausea med odansetron/zofran ameliorates brain fog in hep c patients! Pretty wild stuff those giant brained wonderful folks out there are figuring out!
For Tommy, Bree and Kim (if I remember correctly, BIG IF), y'all got/have joint pain and cramps post tx. This monster out of our systems, then them rebuilding, and, all at once, finally able to do so, some of us got peripheral neuropathy that got pretty bad in the extremities. But, this research is showing this is a systemwide issue affecting the small and medium sized veins and vessels in different patients in different places, but basically it happened to us all to some degree, somewhere... Just a little more light (bwahahaahaa) reading... Also, this is a different link from the same researchers fyi...
Long winded story short, perhaps, God willing, all those veins and vessels regenerating just hurts whilst it's happening cause it's so freakin' MUCH going on. That's my hope, my prayer, my dream for us all.
http://www.hindawi.com
<3 Marianne
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Hi Tommy,
I like the idea if a GP also embracing alternative medicine. I agree with Bree you need a full profile then you can supplement away. Getting those electrolytes balanced is important.
As for pecan pie, I had some once and it was very sweet, I don't know if it was the authentic one guys are talking about. I am always seeing you guys in Diners in movies eating pie. We aren't so big on pie here!
As fir blood letting, well you guys really are behind the times down there in the Deep South he he Cal :)
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Hi Beto,
Do you have haemochromatosis? Cal :)
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Hi Marianne,
How are you beautiful one?
I really want yo read your link, but it only takes me to a website with a few different publications on it? It sounds really interesting. Can you re post the link to it please, pretty please with sugar or stele ya on top? I have large and small vein neuropathy and am having lots if pain, so would live to read it. Thanks. Cal :-*
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Hey Cal,
No I do not have the genetic marker for hemochromatosis...but sported pretty high numbers for a while. Not uncommon for anyone with liver issues, especially middle aged men. They helped. I did not do a ton of them because I responded well.
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Beto,
That's good, it's another complication on tx and for HCVers. Cal :)
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Day 74 (11 weeks Thursday) RIBA cough and palpitations I can feel the HB dropping. Yukon. Cal :)
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Day 74 (11 weeks Thursday) RIBA cough and palpitations I can feel the HB dropping. Yukon. Cal :)
Just 10 more days, Cal. You can do it! Then you'll be on easy street. :)
kim
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Oh Kim,
I'm doing another four weeks aster my 12, because of the resistance issues. Even though I still don't have them back yet 12 weeks later!
So I'm counting down to 12 then starting another month countdown. I am here now so I'll give it all I've got.
I don't even feel that bad about it now. I was really upset at first but it is what it is.
I learnt of a Viekira relapse today, the first one I've heard of. So it makes more sense to tx the hell out of it.
I am getting pain a lot now, in my joints and just random places >:( don't know if it's the ribas. I have an FBC AND LFT tomorrow and results Thursday when I see my specialist. Ho hum Dudley dum! Cal :)
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Beto,
That's good, it's another complication on tx and for HCVers. Cal :)
Cal,
The high ferritin was during my HCV years. Harvoni actually seemed to lower it...which was amazing and as far as I was concerned, a good thing. Of course, I can't be sure it was Harvoni but what else could it be. For some on the meds that are anemic, this could be unfavorable. Another curiosity that we will know more about down the road. I posted about this, but no one else reported a similar observation, but then, not many docs were checking for it.
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Day 74 (11 weeks Thursday) RIBA cough and palpitations I can feel the HB dropping. Yukon. Cal :)
that's because you are kicking butt Cal!!! Eat screaming death hepatitis!!!
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Oopsie! looks like my link above went to nowhere... Thanks Cali girl for letting me know about my misfire :D
here's the proper link, Please Lord help me that I don't repost a bad link cause the cerebrum ain't up to snuff again!!!...
http://www.hindawi.com/journals/jir/2012/236148/
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Cal,
The high ferritin was during my HCV years. Harvoni actually seemed to lower it...which was amazing and as far as I was concerned, a good thing. Of course, I can't be sure it was Harvoni but what else could it be. For some on the meds that are anemic, this could be unfavorable. Another curiosity that we will know more about down the road. I posted about this, but no one else reported a similar observation, but then, not many docs were checking for it.
Beto, I used to have high ferritin, high iron. Curiously, it went away on its own. I adapted a healthy lifestyle - food, exercise, weight, etc., wonder if that did it? If they test for ferritin (which is what doc does), if that is normal, is the iron then also normal? I plan on asking my internist when I see her soon. My liver specialist is to impatient to ask (unfortunately). I keep getting these surveys to fill out on him (I wonder if others have issues) but I'm afraid to, as he is a resource I might need.
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Oh Kim,
I'm doing another four weeks aster my 12, because of the resistance issues. Even though I still don't have them back yet 12 weeks later!
So I'm counting down to 12 then starting another month countdown. I am here now so I'll give it all I've got.
I don't even feel that bad about it now. I was really upset at first but it is what it is.
I learnt of a Viekira relapse today, the first one I've heard of. So it makes more sense to tx the hell out of it.
I am getting pain a lot now, in my joints and just random places >:( don't know if it's the ribas. I have an FBC AND LFT tomorrow and results Thursday when I see my specialist. Ho hum Dudley dum! Cal :)
Cal, I think that is smart with the 4 weeks if you can get through it and I think you definitely can, as you are an all star trooper! Might as well get rid of it once and for all and be done with this (bleep)! Love, Bree
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Oopsie! looks like my link above went to nowhere... Thanks Cali girl for letting me know about my misfire :D
here's the proper link, Please Lord help me that I don't repost a bad link cause the cerebrum ain't up to snuff again!!!...
http://www.hindawi.com/journals/jir/2012/236148/
Thanks for this Marrianne!
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Oopsie! looks like my link above went to nowhere... Thanks Cali girl for letting me know about my misfire :D
here's the proper link, Please Lord help me that I don't repost a bad link cause the cerebrum ain't up to snuff again!!!...
http://www.hindawi.com/journals/jir/2012/236148/
ByebyeC, interesting and very "heady" article. My take-away, is that it's HepC that either causes are exacerbates these issues, mostly due to inflammation in the cells somehow. So bring down the inflammation and it will help (unless it's in the cells to stay?). It's not necessarily a side effect of Harvoni (or other treatment) it's just with the virus removed, this other stuff (inflammation, etc.) is happening or worsening at least for the short term. I'm wondering if I am reasoning correctly or don't know what I am talking about.... could be the latter!
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Oh Kim,
I'm doing another four weeks aster my 12, because of the resistance issues. Even though I still don't have them back yet 12 weeks later!
So I'm counting down to 12 then starting another month countdown. I am here now so I'll give it all I've got.
I don't even feel that bad about it now. I was really upset at first but it is what it is.
I learnt of a Viekira relapse today, the first one I've heard of. So it makes more sense to tx the hell out of it.
I am getting pain a lot now, in my joints and just random places >:( don't know if it's the ribas. I have an FBC AND LFT tomorrow and results Thursday when I see my specialist. Ho hum Dudley dum! Cal :)
You're right, Cal. It makes more sense to keep going now that you're started rather than possibly have to take a 2nd attempt later. Knock 'em dead.
Have a great day, Cal! :)
kim
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Marianne,
Great find...love this study. Besides having PNF issues in my ankles and feet in recent years...I have had many years of CNF complications, and not just talking brain fog, and cognitive issues. At one point I went through several tests and MS was not ruled out until the end. I had a dozen symmetrical "lit areas" on my MRI, the neurologist gave me a funny look when he read the scan. My own doctor suspected the Hep C, but this guy just told me that there was nothing about C and CNS problems in this giant book he held up. I had a hell of a time...of course ammonia is an issue with liver disease and causes hepatic encephalopathy. Saw many neurologists. Thanks...
Bree- Yes, diet does help and I took IP6 for a while too (which was supposed to chelate it) a vegan diet helped a lot, but for reasons I will not go into, I had to change my diet. Plebs just worked fantastic for me. the reference numbers for ferritin are like 18-250-350. Folks with hemochromatosis are sometimes asked to get under 100. Liver challenged people are kind of in that camp too. I had numbers over 800 once. Before Harvoni I was 250...after 4 weeks 83...amazing. It is kinda like lifting another burden off the liver. For anemics..uhh not great.
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B It's not necessarily a side effect of Harvoni (or other treatment) it's just with the virus removed, this other stuff (inflammation, etc.) is happening or worsening at least for the short term. I'm wondering if I am reasoning correctly or don't know what I am talking about.... could be the latter!
Bree this idea resonates with me as well. Hep C creates a lot of issues on our "hard drives" that have to heal over time. I believe in the tenet of healing that things usually (or sometimes) get a little worse before better. Removing the virus gives the body the opportunity to heal.
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Beto,
I feel like I'm kicking butt! Cal :)
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Marianne,
Thanks for re doing that. I actually have it from when you posted it earlier a month ago 8) don't worry, you were pretty ill then my love. I have copied this and given it to everyone who needs it. My GP scanned it for her files. It's a great one to take to the Doctors because it's in their language. Love the aPublication it gives explanation and hope that some if these co morbidities may improve! Fingers and ties! Cal :-*
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Bree,
Thanks dearest, I think it's best to hit it the best I can! So 4 months it is! Cal :)
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Bree,
Thanks dearest, I think it's best to hit it the best I can! So 4 months it is! Cal :)
I would have done 4 months Harvoni if they would have given it to me!
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Thanks Kim,
Yes it's best I do it now. If I relapse, I'll know I gave it everything. Cal :)
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Marianne,
Great find...love this study. Besides having PNF issues in my ankles and feet in recent years...I have had many years of CNF complications, and not just talking brain fog, and cognitive issues. At one point I went through several tests and MS was not ruled out until the end. I had a dozen symmetrical "lit areas" on my MRI, the neurologist gave me a funny look when he read the scan. My own doctor suspected the Hep C, but this guy just told me that there was nothing about C and CNS problems in this giant book he held up. I had a hell of a time...of course ammonia is an issue with liver disease and causes hepatic encephalopathy. Saw many neurologists. Thanks..
Hi Beto,
Your experience sounds similar to mine. I have a lot of co morbidities, that I had to convince some professors was HCV related. In the end they believed me and said come back after tx and SVR. I must SVR, please please! I was tested for MS as well. The virus has impinged on every area of our lives without us knowing it. Cal :)
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Cal...
you will you will you will SVR and though you are :'( now, soon you will be ;D
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You go, Cal. Plenty of Viekirians who did 24 weeks.
In for a penny, in for a pound.
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Beto,
Thanks for the encouragement. I do get worried at times. Cal :)
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Hi Else,
Yep while I'm at it! Cal 8)
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And before you can say 'Bob's yer uncle' you'll be done.
(I'm an Aussie wannabee. Must have been that 14 years I spent with my blue heeler Jack. Sure do miss that dog. It's been 6 1/2 years since he passed. One of those once-in-a-lifetime companions. Guess that makes me lucky.)
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Else,
You must come visit. It' a beautiful country. With you're fluency Australian you'd fit right in! Cal 8)
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Day 76. Tomorrow 11 weeks. I see GP today, so I may get some blood results early. If nit Gastro tomorrow. Cal :)
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Hi, Cal. Just finished taking my 5th full daily dose of Viekira Pak and Ribavirin. Same old side effects but they have not been significant enough to worry about. I'm affected more with insomnia, even with the Tamazspan the doctor gave me. Still doing my daily 1-1/2 mile walks but usually need to nap a bit in the afternoons. Over the last few months when I was on Harvoni (which failed to clear the virus at week 14 (4 weeks after the 12 week regimen) I was only affected by headaches occasionally and the insomnia.
I'll keep plugging away - 24 weeks is a long treatment. Hope you are doing well!
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I wish you the best with the new drug therapy. I will finish up 12 weeks of Harvoni on Nov 16. What genotype do you have? I didn't see it anywhere in your posts. I may have missed it though.
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You are almost there Cal....my Kansas City Royals won the World Series and this city has not slept since.....I went to the parade yesterday along with 800,000 other people. It was very exciting! I think I read that you are doing 4 more weeks right? So will you actually be finished in December? I can tell you that since my treatment stopped ...the insomnia I experienced the last few weeks went away and my appetite came back...boy did it! If it doesn't move while in front of me...I ate it...lol
World Series champions Royals
Scout
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Hey Scout, Looks like You & Your Royals both won the World Series :). Glad Your are feeling better!
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Michael, my genotype is 1a. This is my 3rd regimen of hep C antiviral mess. Two previous tries failed including Harvoni for 12 weeks. Virus re-emerged 4 weeks after last dose of Harvoni.
My viral loads are quite low compared to most - I think my immune system has tried fighting this for many years.
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Hi Scout,
They won! Wahoo! I'm so glad for you. I can just see you at the parade! Yeah week 11 today and one more week and I'm off the ribas! Hooray. Then a month of Viekira. Cal :)
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Hi Mike,
Yeas 24 weeks is a long time but you can do it. Yes you'll recognise some of the old sxs coming through. That insomnia is a treat isn't it. I have temaz too but it doesn't always work. :(
Keep up the walking it will help in post tx. Cal :)
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Hi Mike, 24 weeks seems long but you get into the groove and it's finished before you know it. Look at it as the gold standard of treatment. If Anything's going to kill the little buggers it will be a 24 week DAA treatment.
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Cal, you are nearly done!
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Scout! I saw some pics and that was some parade. Wow!!!
Hi Mike - 24 weeks of DAA is pulling out the big guns. I'm sure this will turn the tide for you.
Cal it looks like you've got two finish lines coming up. Yay to both!!!
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Hi Phily,
Nit quite finished. One more week and finish RIBA s, which seems like finishing in itself! But have another extra month of Viekira to go. Cal :)
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Else,
I never know, is that you in the pic or some gorgeous Hollywood starlet? Considering that I thought your last Avatar was you.........Eminem!
So no not quite finished but close. Unless you count 12 weeks of ribas and finishing the,! Cal :)
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LOL. No, not me. "Carol" from The Walking Dead tv show. Everybody's favorite, loyal, cookie-baking mom. She's just, ummm, practical. Yeah, that's the word. She's not mean-spirited but she does get things done that need to be done. And she's not terribly sentimental. Actually, I'm a lot like that.
I've picked avatars for fun that suited my mood at the time. I was Eminem-angry for quite a while. Now I'm much more composed - in a "Carol" kind of way. Cookies, anyone? :)
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Aha,
:-[ :-[ :-[ :-[
I'm sure your even prettier. The Waking Dead. I've heard of it. Is that the Zombie one? Worth watching? I am still watching Orange is the new Black. Also my fave show is Outlander, but were in drought lander at the moment waiting for the nxt series, don't you hate that? TV has been my constant companion as I've been unable to read or do anything that requires a clear head. Hopefully no ribas will cure that. Though my brain fog was very bad before I started tx.
Cal ::)
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It's the Zombie one and YES, it's worth watching. The zombie's quickly turn into background noise. It's really a post-apocalypse soap opera. I didn't tune in until the 5th season but was quickly hooked and binge-watched the whole series on Netflix until I caught up.
Carol's character development has been a sight to see. At first she was my least favorite character. A helpless, downtrodden mouse. Now? Not so much. ;) Arguably the series's strongest member.
If you watch the pilot episode on Season 1 you won't regret it. It good enough to be a stand-alone movie. But, of course, you want to find out what happens next...
I've heard of Outlander - and saw it for sale at Target. I know Marianne has mentioned it. But it's not on Netflix and we have no premium channels. I love period pieces, tho.
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Else,
Love the choice of avatar. Maybe we all should chose a walking dead character. Or game of thrones is pretty rich in strong and complex characters. Cal...whats up with the TV thing. me too...I used to never watch TV. Now I've learned about the concept of binge watching.
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Else, Outlander is based on Diana Gabaldons well-crafted bodice rippers set more or less in 18th c Scotland and colonial America. You've no doubt seen then if not read them.
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Speaking of bingeing I'm always looking for suggestions and have been meaning to follow up Walking Dead - now I shall. If you are looking for a gorgeous quirky Brit comedy look at Scrotal Recall. So very much better than the name suggests.
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Else,
Don't worry the zombie thing doesn't phase me. Also love a good character driven story. Outlander is almost sci fi in parts but as you say that fades into the background to the story.
Yes Phily the books are great, I have the series here to read, but my brain won't let me, even a good bodice ripper! Hopefully I shall be ok after the Ribas. I have another month of Viekira after this week so am always looking for good suggestions for series. I look into Scrotal Recall and Walking Dead. Hope I get my brain back soon. I miss it. :'(
Yes Bill, I Binge watch as well, I lay with my ipad on my chest watching basically anything. I think in some of us, it takes that concentration away. Drats! :-\Cal
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I told You guys this place was being taken over by Zombies >:( , Now there is proof! Just look at Else, She used to be a normal disenfranchised angry young rapper! Now look at Her :o ::) DVR is the bane to My existence. I've become a procrastinator like My wife & son---- Why do today what You can put off until tomorrow?
Don't know about Game of Thrones either. The Throne part puts Me off here lately :-[. I like eating as much as the next guy, BUT-------???? ???
Speaking of Marianne, anybody heard a peep out of our Little Alaskan Bluebird :-\ :-\ :-\?
Else, Semisweet and white chocolate chip with Macadamia nuts & Pecans about the size of a softball, with a big ole' glass of fresh ice cold Milk or a hot cup of strong coffee! So much butter You don't need to grease the cookie sheet Y'all. Strictly dietary and health conscious of course. No wait----that's a contradiction!!!! But then again so is pea-can pie 8) 8) 8) 8) 8)
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Warning for Philly!!! Re: Walking Dead. There's a brief scene at the end of the very first episode that might really bother you. This isn't exactly a spoiler, but it needs to be said. Gratuitous horse violence. I mean it makes sense in the storyline but it would bother any horse person. :(
I am fond of horses but I'm a dog person. If a movie contains gratuitous dog violence (which pretty much means any) it ruins the movie for me. Any decent plot - scary or not - can easily make do without it. It's a cheap shot to the emotions and it works so I don't like it.
Sorry to be a buzzkill but I just couldn't not mention it. Hmmm. The series is, of course, endless carnage for humans too. Not sure why that doesn't offend the sensibilities in the same way. I guess I expect in-your-face gore of any zombie flic. Goes with the genre.
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Tommy, here is an interesting little tidbit...during the KC Royals parade there were confirmed 800,000 people in a 2.5 million area. There were only 3 arrests during the entire day in that area. I find that to be dam worthy of a congratulations not only for winning the World Series but to the people here in the Kansas City Metropolitan area for controlling themselves and showing the country that hundreds of thousands of people actually CAN celebrate and not make assholes of themselves or embarrass their city in National limelight. It was an incredible day, and one that I, along with my children will never forget
Home of World Series Champs...KC Royals
Scout
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Scout, HERE HERE, Too many assholes out there. The Media always plays to there actions, never to the well mannered having a good time with out promoting violence. They always seem to find the blithering drunks or miscreants out to spoil it for everyone. Seems to be politically incorrect to make them responsible for their actions. Just spin it for higher ratings, so sad. :( :( :( Looks like a trifecta for You to celebrate 8) 8) 8)
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Hi Everybody... got to chime on Walking Dead. I'm a fan. Carol is just plain cool.
Quiet, steely and sly determination. My son turned me onto it (he also turned me on to the former series Breaking Bad). And, now the prequel, Fear of the Walking Dead. I'm embarrassed to say how much t.v. I watch. It's my entertainment when I'm at home (sad, I know;)
And, Million Dollar Listing N.Y. and L.A. And Botched (plastic therapy run amuck and corrected by these two amazing doctors in Hollywood). And, The Voice. The Good Wife. And, Tiny House Nation. And Property Brothers. See what I mean. I'm hooked.
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Bree,
In your and therefore my defence, there's some really good television being made these days! Cal :)
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Bree,
In your and therefore my defence, there's some really good television being made these days! Cal :)
Yep, agreed!
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But then again so is pea-can pie 8) 8) 8) 8) 8)
That's pea-con pie, ya Texas waddy! ;) And I'll be telling my BIL about those macadamians!!! That would make those cookies about perfect.
I like what I learn here. Got to learn what a bodice ripper novel was. So Fabian was the king of the bodice ripper covers, yes?
Scrotal Recall? **snicker** That's my kind of a bad pun.
Beto - it was a tough call between Daryl and Carol. Who would you be?
Bree, I'm getting a kind of "Maggie" vibe from you. Not quite sure. Ya think?
And Tommy??? Abraham without the carrot top, maybe? Hard to say, hard to say. Maybe your character hasn't shown up yet.
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This looks like a great place to set up my bon-bon stand. ::)
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Well Else, Glenn is dead so not too many positive male characters left to chose from...every dude wants to be Daryl. Rick has become way to unlikable, also a bad actor. Hmmm...maybe the Akito dude, but he is pretty mental (not that I'm not...but I will blame my sitch on brain fog).
THIS JUST IN: ACCORDING TO A FIBROSCAN I HAD YESTERDAY, AND IF THERE ARE NO MECHANICAL OR, SOFTWARE GLITCHES, MY SCORE WENT FROM F4, 14.5 TO A F0-1, 6.5...IN ONLY 4 MONTHS. MIRACLE?
I had a story for it but my computer rebooted overnight and I did not save. I think it is better to "wait and see". I still have no EOT results and have to retake bloodwork. We all know to be cautious with these tests. But seriously, if this holds and the scans were both true...that would qualify as a cirrhosis reversal, just sayin'
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Cal, that would be great! Reversing cirosis is very difficult - but the liver is one of the few organs in the body that has regenerative potential.
Just finishing up my first full week on Viekira Pak and Ribavirin. You were correct, as always, that the insomnia is the tougest side effect. I have been very weak and tired these past couple of days. I take my first blood test a week from Monday - hope I not suffering from anemia.
To be quite honest, I am somewhat pessimistic that this 24 week regimen will rid my body of the Hep C. After 12 weeks of 0 viral load while on Harvoni and 4 weeks later a jump to 150,000+ viral count, I sure was a little depressed. But, that depression has been replaced with pessimism.
Good luck on the test results! :)
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Beto,,,are you serious? Is that true? Maybe you weren't really an f4!!!! Who cares,,,,that's awesome,,,,wow!
Scout
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OMG Beto!!!!! That is fantastic. How soon do you get your new blood work back?
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THIS JUST IN: ACCORDING TO A FIBROSCAN I HAD YESTERDAY, AND IF THERE ARE NO MECHANICAL OR, SOFTWARE GLITCHES, MY SCORE WENT FROM F4, 14.5 TO A F0-1, 6.5...IN ONLY 4 MONTHS. MIRACLE?
Wow, Beto!! That is fantastic!! Can give hope to all.
kim
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Let's put it this way scout. I had a biopsy 17 years ago and was an f-2. This scan puts me lower that I was 17 years ago...again if no software or other issues. The scanner they use is one of 2 in our city. Gilead sends folk there for scans. It is one of the better machines. I did not question it when I got the horrible "cirrhosis" news back in June...but, am cautious for this one. It was done on the same machine. There is no way I can go back to June for a biopsy to see if the 1st was correct. I am not alone by the way. Let's hope it is real. Pinch me?
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re-doing blood monday else
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Beto, that's so cool... you have been studying and writing about possible liver damage reversals and wa la!!!
I wish I had a fibroscan as a baseline. My doc didn't bother. Just ultrasound and fibrosure as fibroscan machine on different island.
Anyway, I'm feeling like it's a really positive sign for you!
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thanks Bree and all,
Funny on an ethereal note, yes I have been on that bandwagon and who knows "law of attraction?" nice to think so. I have had discussions about this with some smart people and as we have been discovering here on HepForum, remove the burden and then let the body to it's thing. These meds lift a big burden, and muy rapido Still...I will keep a low key...and be happier yet when I see even more reports like this one. I don't want to jinx it :)
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Whats next Beto,walking on water? :o I very happy for you.That is just amazing.My doctor said they've been discussing doing Fibroscan at EOT12 to see what happens.You get the conga line lead tonight for that one. :)
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:) thanks Bill...I was truly amazed...but, I still somehow wonder if there is a fluke. I have been researching the scans reliability. Nothing is perfect including the "gold standard" biopsy. Some feel that is changing...still..
here is a study I found on FibroScan reliability. over 2000 people in the study...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4071883/
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Here's a scary one for you.What if the problems with Viekira happened because it was prescribed to patients where it was contraindicated because the labs were wrong?
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Cal, that would be great! Reversing cirosis is very difficult - but the liver is one of the few organs in the body that has regenerative potential.
Just finishing up my first full week on Viekira Pak and Ribavirin. You were correct, as always, that the insomnia is the tougest side effect. I have been very weak and tired these past couple of days. I take my first blood test a week from Monday - hope I not suffering from anemia.
To be quite honest, I am somewhat pessimistic that this 24 week regimen will rid my body of the Hep C. After 12 weeks of 0 viral load while on Harvoni and 4 weeks later a jump to 150,000+ viral count, I sure was a little depressed. But, that depression has been replaced with pessimism
Good luck on the test results! :)
Hi Mike,
Yes my fibroscan score wen roll back fibrosis as well from mt my tax. It does happen.
Mike it's understandable that you worry about relapse again, I do all the time. I try not to let myself get in my own way though. It's easy to get depressed about this. You have a long way to go yet and it's up to you if you do it mentally easy or make it hard on yourself. I know it's not that easy though! But they didn't tx you long enough, that's all, you responded well. It's all a crap shoot Mike, none of us know really, but we can be hopeful, not deluded, hopeful. I use Mindfulness to get me through. Google Ellen Langer, she has some you tube videos which introduce you to the practice, see if you like it. If you do, there's a book I'll recommend.
Till then Mike, don't sabotage yourself, remember these are powerful drugs especially with RIBA. I have a feeling you'll do fine. Cal :)
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Beto,
What f***ing brilliant news! You don't get much better than that! Cal :)
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Here's a scary one for you.What if the problems with Viekira happened because it was prescribed to patients where it was contraindicated because the labs were wrong?
bill,
I said the same thing to Marianne the next day after the FDA warning. I'm sure there'll be an enquiry. Cal :)
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Well, less than a week before I kiss ribas goodbye I just had my first stray awake alright insomnia attack! Temazepam didn't work, I took 2. Feel like. CRap. Cal :)
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Cal, I'll be so glad when you bid ado to the ribas. I'm betting that will make a huge difference.
I'm in the middle of the Happiness Trap book... I really like it.
"I notice that I'm having the thought that ........"
I've done a version of this for awhile. Noticing and accepting thoughts, but not giving them the power to be deemed as reality and also making a decision to choose a new or different thought. Have you ever studied Katie Byron's work?
I'll look up the you tube video you mentioned.
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Beto,
What f***ing brilliant news! You don't get much better than that! Cal :)
I know you're right. I think the side effects are getting to me. I need to fight these side effects for a few months until I get used to them. I called my doctor to see if he could suggest something better or stronger to allow me to get some sleep at night. Unfortunately, he left for the day early so I will not actually speak with him until Monday.
I wonder what the % cure is for Viekira Pak + Ribavirin after failing with Harvoni and failing with Pegysis Interferon + Ribavirin. Perhaps if the numbers are good, I will have reason for hope.
Thanks, Cal.
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Hi Bree,
Is this thought helpful, does it impact on my values I.e. To get through tx without adding angst? You've got it Bree! It so works. The thing will be to make it a habit and you're on your way if your reading that book anyway.
No I'm not familiar with Kaye Byron. Is she a Mindfulness gal? There was just a free Mindfulness Summit on through October where everyday you could log on and see a new world expert speaking. Google it, there may still be some links to speakers up.
Yes goodbye Ribas. Though they can take a while to leave the body, so it'll be a gradual thing, but it's got to be better! Cal :)
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Hi Mike,
Yeah, but I know it is easier said than done, I still have days when I can't handle it. But I know it's not helping me or achieving anything. It is what it is. If we relapse again (doubtful) then we retreat with new drugs coming through. Merck and Gilead.
Please stay away from Dr. Google. It can make you wiser but more anxious. The truth is with us there are no studies yet, it's too new. So they don't know. I wouldn't have txed this time with these drugs if I didn't think I could beat it. I'm a researcher in Genetic Epidemiology, believe me, the real publications are not on the net you have to be in research, Science, Medicine to access the publications.
General google can be dangerous, you can get information but not have all the facts to formulate an accurate conclusion. You may think you have information but it needs other parts like a jigsaw.
You're on the path now, so walk it with calmness, not fear. Were on the path with you.
Yes get some drugs, sleep is so important. Says the girl who's been up all night! Cal :)
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Correction: It's Byron Katie! She has a process called "The Work" You can google her. She has a "Judge thy neighbor" worksheet. The essense is 4 questions, which are:
1. Is it true? (Yes or no. If no, move to 3.)
2. Can you absolutely know that it's true? (Yes or no.)
3. How do you react, what happens, when you believe that thought?
4. Who would you be without the thought?
Then, there'a turn around.
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Your words and concepts are soothing and, of course, correct. It's the old story of causes of stress - if I have no control over the variables affecting a situation, then there is no sense fretting or worrying about it. It is what it is! In this situation (fighting Hep C), 80%+ of the variables are uncontrollable. The only controllable variables are the available treatments, i.e. Harvoni, Pegysis interferon, Ribavirin, Viekira Pak, etc. if there is no data available on my predicament, then that too is an uncontrollable variable.
By the way, I looked up Ellen Langer, an amazing psychologist with revolutionary research. Thanks.
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Hi Bree,
I just had a quick look at her stuff, I need to read more. Is she CBT or Mindfulness. She looks good. Cal :)
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Hi Mike,
Some people have had problems with Harvoni,and damn near every had failed the Peg(only 30% success).The side effects suck but remember this isn't forever.I know it's hard to be positive when you feel bad but you need to hold on to the hope.Give it time and wait for your numbers to come back and see how it's working.You're a Viekirian now and we don't take no stuff from no stinking virus. 8)
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Hi Mike,
Yes! Is it certain, probable or only possible? If only possible as you say, uncontrollable but uncomfortable variable. Therefore out of our control and therefore no amount of worry or stress will be helpful. Glad you like Ellen Langer. She's particularly good.
Well be ok mike, if we keep our thoughts out of the spiral. Ribas do muck with the brain too, so only take a pinch of the crap it dishes up as true. It will work this time though, I a it relapsing again nit on my life script! :)cal
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Hi Mike,
Some people have had problems with Harvoni,and damn near every had failed the Peg(only 30% success).The side effects suck but remember this isn't forever.I know it's hard to be positive when you feel bad but you need to hold on to the hope.Give it time and wait for your numbers to come back and see how it's working.You're a Viekirian now and we don't take no stuff from no stinking virus. 8)
Right on Bill! Cal :)
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I think probably more mindfulness (or forget your mind;). Not sure she has a label. Her story is amazing. She has huge numbers of followers. I get her feed on my FB... it's a weekly thought.
She's more like "Who is the thinker of the thought". Very much living in the present and very accepting of "what is".
Another book I loved (old book) is "The Secret of Letting Go". by Guy Finley (want what life wants). https://www.youtube.com/watch?v=TcYBWPCV37Q
(knowing that life will give you more than it asks you to give up)
I also really like Martha Beck and her writings (who had an endorsement on the cover of Happy Trap") I get her on FB too.
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That is a interesting article on the Fibroscan Beto.Are you going to get another done at some point?
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Beto, I think you said you paid out of pocket for the scan? How much is it?
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Hi Mike,
Yes! Is it certain, probable or only possible? If only possible as you say, uncontrollable but uncomfortable variable. Therefore out of our control and therefore no amount of worry or stress will be helpful. Glad you like Ellen Langer. She's particularly good.
Well be ok mike, if we keep our thoughts out of the spiral. Ribas do muck with the brain too, so only take a pinch of the crap it dishes up as true. It will work this time though, I a it relapsing again nit on my life script! :)cal
It's just been a rough year for me. My son was diagnosed with a malignant brain tumor last October. He went through 6 months of proton radiation and we were thrilled to learn it killed the tumor. Then, my Dad passed away on July 1st of this year. I was his care giver and lived with him for 15 years to care for his dementia and eventual Alzheimer's. At that same time I was put on Harvoni. Things are just piling up on me, that's all.
Staying with this forum will get me through the next 6 months.
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That's a lot to deal with Mike. "Life is in session" even though we are on treatment. You've had your share. That was generous of selfless to be there for your Dad in that way. I'm sure life will reward you for your kindness of spirit. I'm glad you son is better and now it is your turn!
I think this just might be your time! Hang in there. Warmly, Bree
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mike...wow...you are another one of those tough survivors. I am so sorry for your trials. The hep, the cure, the failed cure or whatever is happening to oneself, is just that...then there is all the other battles we face. Having to deal with an ailing son and a dying parent are too much for most people without a trying illness also going on. You will get some breaks my friend. In the meantime, you are a testimony of strength.
Bill- I expect that my doc is sceptical and will consider another to make sure.
Bree- I payed out of pocket for the one back in June, because of my insurence. It was only 350.00, way less than a biopsy and takes 10 minutes. This recent one was free because I was doing it for a fibrosis reversal study (I am not kidding, a good story) I was not accepted to the study. I did not qualify because my numbers we to low.
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Great reason not to qualify Beto!
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a good problem to have...no doubt
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It's just been a rough year for me. My son was diagnosed with a malignant brain tumor last October. He went through 6 months of proton radiation and we were thrilled to learn it killed the tumor. Then, my Dad passed away on July 1st of this year. I was his care giver and lived with him for 15 years to care for his dementia and eventual Alzheimer's. At that same time I was put on Harvoni. Things are just piling up on me, that's all.
Staying with this forum will get me through the next 6 months.
Oh boy Mike,
I am so sorry. You have had one major stress after another, your nervous system has taken a thrashing. Have you had any support during this trying time? I see a Mindfulness Psychologist. She helps me stay on course. Because life does get more stressful, there are more adversities as we get older. Looking after your Dad must have been very difficult at times, and your son, well that is so awful and I am so glad he us well again. It all comes at once sometimes, but if it's one thing after Another, on top of dealing with the pain and physical and mental stress of treating, relapsing and living with HCV , then it can move into a stress disorder. So I really want you to have some support if possible. It's your call of course. You know if extra support would help or not. Yes it's down to us to do this, but sometimes we just can't do it all alone.
We'll do everything we can to support you Mike, you're one of the Forum gang now. You're a Viekerian too! Cal :)
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You've taken a huge beating Mike but remember that those around you have also.It sounds like you've been there for everyone else but you need to take care of yourself.Not just for yourself but for them as well.One step at a time Mike and if you need to unload you know where we are.This is one fight you're not in alone.GL
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That's a lot to deal with Mike, as others have said. Why di you need to fight the sx? Sometimes it's useful to just stay in the river and have it take you where it will. I was on 24 weeks of VP + Riba and every now and then just gave in tot he crap piling up, lay on the lounge for a day and pulled the blanket up around my ears.
Maybe you have a a lot of things to do, of course, and only you know what is best for you. But every now and then a day recharging my batteries was necessary. Good luck with evrything.
Cal, are you off riba yet?
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Philly,
I'm off Ribas in 2 days. 12 week mark. Wahoo! Horrible things, trashed me well and truly. I'm having a V/l on Friday and LFTS as my LFTS have been raising steadily over the past month. I'm worried but Doctor isn't. If I've relapsed I come off it straight away (when he gets back from the San Francisco Conference.) If not I do another month on Viekira. So tx is a but nebulous for me at moment. Not happy Jan. :-[cal
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That's a lot to deal with Mike, as others have said. Why di you need to fight the sx? Sometimes it's useful to just stay in the river and have it take you where it will. I was on 24 weeks of VP + Riba and every now and then just gave in tot he crap piling up, lay on the lounge for a day and pulled the blanket up around my ears.
Maybe you have a a lot of things to do, of course, and only you know what is best for you. But every now and then a day recharging my batteries was necessary. Good luck with evrything.
Cal, are you off riba yet?
Philadelphia, thanks for the feedback. I am feeling a little better than I did last week. I just let the disappointment get to me. The side-effects "seem" less harsh - I've been able to do my 1-1/2 mile walk the past two days. The only part I am a little frustrated with is the inability to fall asleep quickly and to stay asleep. I go to bed around midnight, fall asleep about one-ish, but I awaken at 3:00 or 4:00 AM. So the tiredness and weakness remains at the forefront. I had none of these side-effects with Harvoni. I get the sweats every night between 7:30 and 9:00 PM. So I usually lower the A/C a degree or two.
I am just hoping that my body gets used to the medications and tracts less re: side-effects. I just make it my priority to get up, go walking and take care of grocery shopping, banking, etc. I must get exercise - that will eventually allow me to sleep better.
Taking my first 2-week blood tests a week from today. So I'll know if this is working in two weeks when the results are back. I'll also will find out if blood counts are in normal range and how my liver enzymes are.
Thanks everyone for your support. Have a great evening (day for Cal) everyone.
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Cal, if you were at 54 after 2 weeks,,,your gonna be undetected...have faith....we are all rooting for you...
Scout
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Scout,
Thanks so much. It means a lot to me. But I have to be realistic, I work on the better to be prepared for bad news than ignore the warnings. But you're right. It ain't over till the fat lady sings! I'm in with a chance. What a great forum and great woman you are. Cal :)
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Cal, I don't know what's happening. I think you are o.k. I think once you are done with the ribas and have a little time to recover from that it will really help. I know you will be relieved to get these next blood tests so you can assess things... I still feel like thing will be o.k. Please try not to worry... I know it's hard, but you deserve some peace. Love, Bree 8)
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Hi Cal! I've always thought there was an upside to pessimism. I'm rarely truly disappointed and often happily surprised. 8)
I'm so glad you're done with the ribas! But from what I've read here it will take a while for the side effects from them to subside. Think of yourself as a boxer who just went the 15 round distance. THAT is success! Of course you're waiting for a good decision on the match, but in the meantime... ouch. Lots and lots of R'nR for you!
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Today must be your last day of ribavirin, Cal. I know what a good feeling that is! Even though it takes a while to clear the system, I felt an inner strength (and calm) return to me once I was no longer ingesting the ribas daily. Congrats on that. And good luck with all else. I wouldn't worry too much about slightly elevated LFTs. There can be so many things that can cause that.
stay strong,
kim :)
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Hi Cal,
Relax and wait for the lab results.We all know that's easier said than done but you've done great so far and I'm sure you'll be pleased when you get them.I'm glad that you're finishing the ribas.I didn't know if I was ever going to be able to put the knives back in the drawer.You're going to be fine Hun.You're a Viekirian and as our motto says "We don't take no stuff from no stinking virus.". 8)
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Cal, I don't know what's happening. I think you are o.k. I think once you are done with the ribas and have a little time to recover from that it will really help. I know you will be relieved to get these next blood tests so you can assess things... I still feel like thing will be o.k. Please try not to worry... I know it's hard, but you deserve some peace. Love, Bree 8)
Hi Bree,
Thanks for your encouragement, if anyone would be positive for me, it would be you 8) I'm ok. I am taking my last ribas tonight (it's midday now) so yes it will be a big relief. They have really knocked the stuffing out of me. Yes I have the bloods tomorrow and results next Wednesday. I am trying not to worry. It is what it is. Cal :)
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BTW Cal,
I get my labs done tomorrow to but i won't know until Friday what they are.Don't start the party without me. ;)
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Hi Cal! I've always thought there was an upside to pessimism. I'm rarely truly disappointed and often happily surprised. 8)
I'm so glad you're done with the ribas! But from what I've read here it will take a while for the side effects from them to subside. Think of yourself as a boxer who just went the 15 round distance. THAT is success! Of course you're waiting for a good decision on the match, but in the meantime... ouch. Lots and lots of R'nR for you!
Hi Else, I like that upside to pessimism :P Thanks for giving me permission to be real. I have always been an optimist, but this is different! We are all facing this health crisis, but some will make it and some won't it's a fact. But I am working on managing the reality with mindfulness. It's now about how I cope until I know and if I relapse how I cope with that. If I make medical history, then I promise to be the optimist I used to be once again. Cal :)
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Today must be your last day of ribavirin, Cal. I know what a good feeling that is! Even though it takes a while to clear the system, I felt an inner strength (and calm) return to me once I was no longer ingesting the ribas daily. Congrats on that. And good luck with all else. I wouldn't worry too much about slightly elevated LFTs. There can be so many things that can cause that.
stay strong,
kim :)
Yes Kim tonight is the last ribas, Woohoo, It's Week 12 today, I would have been finishing EOT and all, but I am finishing the ribas so that's a cause to celebrate. One more month of Viekira. Thanks for telling me about the calm. I shall relish that! Yes I know LFTs can be elevated with other things, I am hoping that is the case of course. I am having a lot of liver pain again, letting that be.....Cal :)
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Hi Cal,
Relax and wait for the lab results.We all know that's easier said than done but you've done great so far and I'm sure you'll be pleased when you get them.I'm glad that you're finishing the ribas.I didn't know if I was ever going to be able to put the knives back in the drawer.You're going to be fine Hun.You're a Viekirian and as our motto says "We don't take no stuff from no stinking virus.". 8)
HI Bill,
I am a Viekerian and I will stand by our motto. Cal 8)
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Going for my 12 week V/L now. Sooooo nervous. But I won't know till next Wednesday, this is torture! Cal :-\
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Going for my 12 week V/L now. Sooooo nervous. But I won't know till next Wednesday, this is torture! Cal :-\
I am sure you'll do great - Cal. You'll pass with flying colours!
kim :)
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I know exactly where you are at. It'll be ok...take the test and find something to occupy yourself. You will be undetected...have faith
Scout
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Yes, Cal this is a good thing. You'll be happy once you know so you can relax. It will be a good result. Apply the mindful techniques about helpful thoughts 8)
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Hi Cal,
I just got my labs done today and will find out tomorrow so I understand the nervousness.I'm looking at your numbers and was wondering if this is your first blood draw since week 2?You're VL dropped from 9M to 54 in 2 weeks so something good happened,and you've got 10 more weeks behind you since then,and 4 more weeks to go.Try to think about that and have some faith in the progress you've seen already. :)
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Waiting blows. Do you ever listen to audiobooks? I've found one can still worry and let the mind wander when watching something. Not so much with an audiobook.
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Thanks everyone,
You're all so supportive and positive, what would I do without you? Yes I have been applying mindfulness and am not too bad mentally right now. We'll see what Wednesday brings.
Bill,
No I've had LFT's and my ALT and AST has been steadily rising over the past 4 weeks. We don't know why hence the V/L. In Australia they are happy to let you wallow with a 2 week VL and a 12 week post EOT VL.
If I'm UND then the rise is from something else? I am having lots of liver area pain? But I need to get through tx first. Hopefully I haven't relapsed which is what we're checking. I'm hopeful, but not delusional. As a previous relapser I know this trip ::) But like I said I'm not freaking out yet. I'll save that for Wednesday. SO be warned everyone! Cal :)
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Hi Else,
My Dad listens to audio books, they are great. I can't concentrate very well. I can't read a book or anything. The ribas scatter your brain. I watch TV but it's so boring after 3 months of it! Though I have watched a few good Series. I am about to watch Amy Schumer I love that chick! Cal ;D
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Rest well and enjoy your weekend!
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Hi Else,
My Dad listens to audio books, they are great. I can't concentrate very well. I can't read a book or anything. The ribas scatter your brain. I watch TV but it's so boring after 3 months of it! Though I have watched a few good Series. I am about to watch Amy Schumer I love that chick! Cal ;D
I love Miss Fisher's Murder Mysteries, set in 1920s Melbourne and featuring a very self-possessed female detective played by Essie Davis. Do you watch that, Cal? I bet you would like it! :)
kim
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Else,
Thanks I had a great weekend away. Feel so ill, bloody ribas are giving me skin splits and insomnia now. Is there no end to this drug? V/l results in 2 days! Freaky. Cal :)
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Oh Kim,
I do watch mrs Fischer! I didn't know it was on in the u.s. Too! It's great . Cal :)
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Hi Cal,
I was posting to Jaf just now saying that the three of us find out this week where we stand.At least you're done with the riba and you can get that out of your system and move on from it.That has to be a small blessing in itself.My doctor told me my white count was up.It's odd that I felt great when I saw her Friday(got the labs Thursday)and today I feel like I'm coming down with something.Maybe I was when I had the bloods done and that's what they picked up.Anyway we have a big week coming up and I have faith we're going to all get great news.Everyone please fasten your seatbelts and put your trays in the upright position. 8)
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Else,
Thanks I had a great weekend away. Feel so ill, bloody ribas are giving me skin splits and insomnia now. Is there no end to this drug? V/l results in 2 days! Freaky. Cal :)
Hang in there Cal - it will pas in time.
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Bill,
Yes the 3 of us. I'm on the 12 week bloods. I'll post as soon as I know. You do the same and we can celebrate together. Your ALT's are fantastic!
It's normal to get sxs at different times in tx. I would just go with it, float, clouds, bunnies, puppies, babies........Cal :)
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Hi Prudence,
Yes, I'm moving with the goovin. Not long now. Cal :)
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Day 89.
Hi all,
I have awoken anxious today. Don't know if it's because tomorrow is D Day or it's the ribas. Guess I'll never know. Just keep on Dorying. Keep on swimming, keep on swimming! Seeing my Psychologist today. I haven't seen her for a while, I hope to get some techniques of mindfulness to stick in my tiny little mind, so I can cope with whatever us thrown at me tomorrow. Cal 8)
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I can't wait to hear the news tomorrow, Cal. I've been thinking of you.
Re: anxiety, have you ever tried diaphragmatic breathing? Man, it really, really helps.
https://www.youtube.com/watch?v=0Ua9bOsZTYg
If that link doesn't work for you there are tons more on YouTube. I use this technique a lot. A whole lot!
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Good luck tomorrow, Cal! Eager to hear your news. Wishing all the best for you. :)
kim
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Cal, I am waiting for your words " undetected" what time is your appt? I was so excited before I got mine!!!! You got this....Really!
Scout
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I'm feeling good for you Cal. I know it helps to hear... I just got a VL 6 weeks post treatment (for varying reasons) and it's UNDETECTED!!! I didn't think it was bothering me that much but I noticed how good I slept that night! I know you will too!
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I can't wait to hear the news tomorrow, Cal. I've been thinking of you.
Re: anxiety, have you ever tried diaphragmatic breathing? Man, it really, really helps.
https://www.youtube.com/watch?v=0Ua9bOsZTYg
If that link doesn't work for you there are tons more on YouTube. I use this technique a lot. A whole lot!
Hi Else,
Thanks for looking that up. I did yoga for years so yes have and do use that breathing a lot. It does work. Thanks for thinking about me. ;D Cal
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Thanks Girls,
You're all so lovely and positive. My appointment is at 11am but I usually have to wait a bit. So I'll post as soon as I can I promise.
Bree that's great news. You have been a beacon of hope for me all along with your attitude.
Love to you all and sincerely thank you. Cal :)
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All fingers crossed!
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Ok Bree...if it's 11 am in Australia what time is that in the states? I just don't have the brain power to figure it out today....did a 14 hour shift yesterday and getting ready to go back
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Cal- your big day. Everyone is pulling and praying. This will be a slam dunk. May all of the positive juju in the world be with with you today.
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We're all with you today Cal - good luck!
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Depends on where you are, Scoutdoy. Cal is non DLS, so an hour behind other eastern Aust states. For her right now it's 7am. In NYC it's 4pm, Chicago it's 3pm, Vancouver it's 1pm. Of course if you're in Newfoundland it's 5:30pm. Newfoundland is so awesome it has its own time zone.
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Ok Bree...if it's 11 am in Australia what time is that in the states? I just don't have the brain power to figure it out today....did a 14 hour shift yesterday and getting ready to go back
Scout, I'm in Hawaii so don't know about Australia. Think question was meant for Cal...
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I am on Chicago time....thanks Philly....I am just really rooting for her and she has been with me on this forum since I started the treatment. Eeeeegadds the suspense of her tests are stressing me! Lol
Scout
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Hi Friends,
The test was not back! I go back to my GP at 9am tomorrow morning. She rang the lab and they are doing it now. I am exhausted, all that anticipation. Now I have another sleepless night again. Oh well nevermind. My AST and ALP's have gone down slightly. 2 and 1 point respectively. My ALP is steadily getting higher though. Just in normal range. It must be the Viekira or something other than the liver because it was always low before tx? I am still getting pain in the liver too. Tomorrow will reveal all.
Thanks for sending me your Juju! Your collective concern has really helped me to get through this, thank you. Cal :)
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Go get some sleep Cal.I'm losing enough for both of us. ;)
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Thanks Bill,
I'll sleep and you can keep watch! Cal 8)
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Cal, tell your doctor that your forum friends are stressing over the delay in your results....LOL....waiting to hear your good results tomorrow!!!
Scout
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Good on you Scout!
It was my exact thought as I left her office! I have friends on the other side of the world sweating on this! You're a doll. Cal :)
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I just got a call from my GP. Vi/L UND!
I did not see that coming! I'm still in the race gang! Cal :)
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Thank you sincerely for sustaining me through this stressful time. You're amazing ;D
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Whooo!!!!!!!!!
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(I'm very chuffed for you)
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I told you cal!! Now I can stop stressing waiting for your results! CONGRATULATIONS .....your on the cure train for sure.....
Scout
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Thanks Phily and Scout,
I am feeling very lucky right now. Cal ;)
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Cal, wish you could see the huge grin on my face as I read your great news. -Gnatty
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I'm thrilled for you Cali.Of course we knew this was the only way it could turn out since you're a Viekirian,and as our motto says "We don't take no stuff from no stinking virus.". 8)
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I just knew it (from my crystal ball)!!! I think it's all moving in a great direction for you Cal... trust that as best you can. So happy for you!
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Well Cal,
You know that there is a huge collective relief with all your flock of concerned hep cronies. If I could drink I'd be busting open a bottle of fine champagne. This feels like Christmas. Yipppeeeee!
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Fantastic news, Cal!! So happy for you. :D
kim
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Bwaaaaaa! No words..... https://www.youtube.com/watch?v=cKg8IKfZ4cE ;D ;D ;D
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Gnatty, Bill, Bree, Beto, Kim and Else,
Thank you all for putting up with all my paranoia and fears. You have been my anchors in this stormy sea of tx.
I'm a proud Viekarian Bill, now let's get that non alcoholic champagne and that virtual conga line and play! You guys are awesome. Cal :)
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That's some great news Cal. so glad to hear/see the Undetected. Woo-hoo
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Cal,,,,,,it's quite the stress relief isn't it? I know it was for me....just knowing that it is out of your system is wonderful. I remember sleeping really well the whole next week after I saw the words undetected
Scout
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Congratulations Cal , good news!!!
I am happy for you!!!!!!!!
Madelief
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One more week and I should have my 12 post EOT LFTs, two weeks and I should have my VL. I hope it'll be more good news for this merry band of Viekirians :)
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One more week and I should have my 12 post EOT LFTs, two weeks and I should have my VL. I hope it'll be more good news for this merry band of Viekirians :)
That's terrific Philly!
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Thanks Chuck and Madalief,
It's a nice feeling fir sure! Cal :)
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Hi Scout,
Yes it's a stress relief though my brain hasn't caught up, I was still having nightmares this morning. Hopefully, I can cram enough happiness in there to squeeze it out. :) cal
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Phily,
OMG has it been 12 weeks already? You don't need good luck, you've had great LFTS and you're a sure thing fir SVR. What are you going to do with the rest if your life? Cal :)
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Woo-hoo Philly!!! Good news coming! 8)
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WHOOHOO Cal! Great news! We Viekirans are getting stronger and stronger! Relax and enjoy!
Can"t wait to hear from you Philadelphia - Cured, cured, and more cured coming down the pike.
Big smiles to all!
Prudence
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If I am lucky enough to attain SVR12, I am going to work darned hard to make sure other people get the opportunity I have had. That's one thing I plan on doing. And travel. Lots of travel ;)
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Phily,
Sounds like a great plan. We owe it to our fellow travellers to make sure they get these drugs. It looks like an announcement in the new year they say February, then hopefully it's good news.mi know the financial aspects are negotiated and we know The PBS gas the money now. So it's the toll out of the drugs that will be next. They are aiming fir GPs and Drug community groups with a Doctor to prescribe. There will be an initial triage I'm sure.
Now travel, sounds great. I still have 2 at home at uni, so my turn will come. I have a friend going on the Queen Mary 2 fir a long long cruise, doesn't that sound relaxing? Cal
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Cal, I was just talking to my 18 yr old about taking a cruise together before she goes off to college....it sounds so relaxing
Scout
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Hi Scout,
I had a great time on the cruise I went on when the kids were in high school. It was relaxing, and I put on 5ks (10lbs) you beat so much, well if you're a piglet like me! Cal :) definitely go.
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I'm heading to Canada on Boxing Day to see my eldest who lives in Vancouver. We are travelling to Cuba together. What fun!
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Phily,
That sounds great. I wish I was as well as you. I hope one day il be the old me again and get back to all the fun things in life. I'm sure I will. I went into this tx very ill, so i can't expect too much. Cal :)
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You will be one day, Cal.
Greg told me I was very sick, so if I can get better you certainly can.
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Stop with the If's and Hopefully's.You're Viekirians. 8)
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"We few, we happy few, we band of brothers ... "
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Hi Phily and Bill,
I have a few health issues to get through next, including that pesky thyroid removal and muscle weakness which had been a constant for so long, a fibromyalgia type thing. But yes I am a Viekarian, a band of brothers and sisters. Cal :)
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Cal,,,,,are you feeling better being off the riba's?
Scout
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Hi Scout,
Not yet! Had a little ole riba rage incident last night! Waiting, waiting............ Cal :)
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Hi all,
Week 14 today. 2 more weeks to go. I see my Gastro today. Usual nerves.
I am experiencing post tx sxs already and that's down to the ribas. Lots of pain, weakness, sweats, muscle pulling. Peripheral neuropathy is worse, I hope this settles down, my feet are burning up. Sores are clearing, but rash is still as itchy and horrible two weeks post ribas. I will post if Gastro tells me anything new. Cal :)
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I hope you feel better soon Cal. All my love, Bree
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Sorry cal I don't understand what being on RIBA is like. I hope the sides go away for you so that you can enjoy being undetected. Tomorrow is Thanksgiving here in the states, and we all have to put on happy faces, take a Xanax or Valium, and go eat with our entire family and then experience the dreds of Black Friday! I have to work With the crazies that come out starting at 5 am ...eeeegaddds!
Scout
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Hi Bree,
Thanks dearest. It's just post tx stuff. It'll pass. I'll be ok. Cal :)
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Hi Scout,
Thanks friend. I'll be ok just post tx stuff. Been here before. I still have 3 weeks (not 2) of Viekira left. So it'll be a total OF 17 WEEKS.
Happy thanks giving. It's a nice thing to do be with your family. I didn't realise it was so close to Christmas. Enjoy yourselves. You have much to be thankful for this year. Cal :)
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I know what you mean about post-tx stuff, Cal! Just when you think it's over (the riba) and gonna get better... stuff gets really bad for some reason - at least for some of us. But you're right, you'll be ok. Just takes time. That post-tx stuff will go away. Mine took a number of weeks to disappear (maybe 10). But I am good now - in fact, I am feeling really good health-wise.
(I am having other highly stressful problems in my life right now relating to heartless brutal government agencies trying to murder my elderly mother by trying to remove her from her home against her will and seize her assets because she won't live the way they want her to. But that's another story for another day. Like Thoreau wrote in Walden: "If I knew for a certainty that a man was coming to my house with the conscious design of doing me good, I should run for my life… for fear that I should get some of his good done to me – some of its virus mingled with my blood.")
kim
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Kim,
Yes I recall you had a hard time post tx too. I went into this tx sick, so I can't expect anything else. I have to just go with it. :-X
That is terrible about your mum. I am looking after my 89yo father. He thought he was dying yesterday, it's so distressing. Old age is a horrible place. We lost mum 5 years ago and Dad has never recovered. It's a huge stress trying to get them proper care and services and fighting fir what they are entitled to. Cal :)
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Well I'm definitely, in post tx stage even though I am still on the Viekira fir another 3 weeks. But over 2 weeks post RIBA.
I have muscle pain weakness and get soo tired post exertion. My feet are burning! If anyone has any ideas about this would be grateful. A nurse friend has told me an over e counter product to rub into the feet. Metsal. I am getting that today. Cal :)
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It's Sunday morning and I just counted my pills. This time in 2 weeks I shall finish Viekira and move over to the "other side"! I thought it was 3 weeks but it looks like I will have done 16 1/2 weeks. I think ill oi it down as 17 it's too unfinished otherwise I am nervous already.
Cal :)
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Hi Cal,
I'm glad you're almost there and I have faith you'll be fine.You go girl. :)
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Aw thanks Bill,
It's been a ride alright. Then into limbo/purgatory for the wait.......................
Thank you for supporting me, you've been really positive all along. Much appreciated my friend. Cal :)
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Hey Cal, When is your completion date? I'm confused...
My wish for you ... that you can maybe start to re-frame that "limbo/purgatory for the wait" mindset. Up to you... and it's tough but you will get better each day after the meds even if there are challenges along the way.... I don't want to deny your feelings in any way... (and as we know from ACT, we can't do that), it's just that it's not helping to view your days that way... (said with love;)
I'm about to finish the Happiness Trap book.... it's really awesome. I had borrowed it from the library, and even got an extension, it's a slow read to absorb for me in the middle of all kinds of b.s. in my life at the moment... but I swear it has changed me. I'm going to buy my own copy and try to practice all the exercises more. Thank you for suggesting that to me!!! Love, Bree
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Oh Bree,
Aren't you a sweetpie.I do love you. I am really ok. I am about to finish the Viekira in 13 days time. So then it will be EOT at last. 17 weeks later......
I think that it is a purgatory for some. In that no man's land waiting type way. I'm afraid that I have to be a realist about the possibility of relapse. I am high risk for it. Hence getting the extra 5 weeks drugs. My Gastro has a back up plan for re txing already if I do relapse. I am at peace with it all. It will be shattering of course to go through this again. But I am still hopeful Bree. I don't think about relapsing at all. I am focused on how good I am starting to feel and getting on with life.
The Happiness Trap is my Bible, I use it as soon as I wake up to get me out of bed. No unhelpful thoughts gonna stop me now! SO glad you loved the book. My boys love it too. My eldest is having ACT therapy now. It is going to change him and he has already started to change and be happier. It's magic.
Thank you for worrying about me. I do appreciate everything you say to me and don't ever worry about telling me off if I get negative. I need that! Cal :)
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You come a long way from the being stressed waiting on your results to where you are right now Cal.I'm happy to see it.Tell your doctor you don't need his backup plan because you're doing just fine,thank you very much. :) The only time a book has ever gotten me out of bed was when someone threw it at me and told me to quit snoring.I have to say that I really prefer coffee to get me up if I'm given a choice. :)
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Oh Bill,
That's so nice of. You to be so positive fir me. I'll keep the back up plan just incase ::)
I am good. I think the hep gives us so much anxiety and depression and that has lifted recently, so I am feeling good! Cal :)
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My heart goes out to you, Kim. I'm sure you will persevere taking care of your mom. Crap time of year for this to be going on - not that there'd be a good time. :(
I should know by now, but I can't recall - are you Canadian?
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My heart goes out to you, Kim. I'm sure you will persevere taking care of your mom. Crap time of year for this to be going on - not that there'd be a good time. :(
I should know by now, but I can't recall - are you Canadian?
Yes, I'm Canadian. Thanks for your sympathies on this problem, Else & Cal re: social services trying, in their overzealous and over-reaching quasi b.s. authority, to kidnap and murder my elderly mom and seize her assets. It's an awful situation (all triggered by an anonymous call from a neighbor who has never met a single member of our family). And it is causing me a great deal of stress. I can hardly sleep right now. Very hard for me to get on with my healing and my New Life post-hcv in the way I had hoped to. And so disturbing to have this hanging over us during the final phase of my mom's life and my time with her on this planet.
kim
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Kim,
I'm so sorry for you. I worked in aged care as a Social Worker many years ago and I know in Australia to pay for our ageing population Dad's house asset, could also be a percentage seized by the Government if he goes into care. It is so unfair. My father, has said that he will die at home. I think he has a plan. I don't blame him. He said to me, the only thing that gives me comfort now is knowing that my house will clear you girls debts. I was enquiring about the first stage care assisted living accommodation and found out all this Government intervention was going on. It is really unfair. But I don't know what the answer is in Australia. Perhaps if politicians took a pay cut?
I don't know your laws in Canada but I know the stress of it all at our parents age is shameful. We are the ones left trying to navigate a rip off system and get the best care for our parents that we can. It is just so hard. I am sorry for you. I know what it's like. I stay with Dad a lot, he lives an hour away from me. He just got a new Doctor because he other Doctor kept prescribing him more drugs AD's and benzos. The new Doctor said he would call the other Doctor and tell her what he thinks! My Dad lost 6 kilos (12lbs) he weighs less than me now and i'm small.
Sucks that a neighbour wouldn't intefere on that level. Good luck and try to do some deep relaxations to offset the stress. If you have a smart phone, download this app, it's free, Smiling Minds . It has lots of meditations and relaxations on it. I use it a lot. Cal :)
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Thank you Cal! :) Sounds like you know what I'm talking about.
(No smart phones for me. I live a life without any wireless RF-emitting devices in my home or on my property, and always have. No cell phone, DECT phone, microwave oven, WiFi, smart meter, wireless mouse/keyboard - nada.)
I am sure I can find some relaxation aids. And I am a longtime practitioner of T'ai Chi and Qigong. So I do have the 'tools' to relax, centre, balance... But boy is it hard to deploy them when so much crap is coming at you in a situation like this where the happiness of an elderly parent is at stake. :-/
Hugs,
kim
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Kim,
I admire that you can live without all the trappings (and they are trappings) of technology. I have two sons 18 and 21 and technology rules. I have always been a bit of a tech head myself. :-[
Is it for health reasons? Because boy we don't know what the effects are. I often think about this and about how I refused to live near electricity stations or pylons. It's weird to think of this wireless just being everywhere. I live in a suburb where the coffee cafes are big. Everyone of them has wireless. I don't know how to live without a microwave!
Yes it is shameful what our poor mum and Dad are being put through. I just stopped everything and he is convinced he will die at home. However, that's a little naïve as anything can happen when you weigh 55 ks and have no muscle tone. If he has a fall then it could be out of our hands. Then we are at the mercy of the system. It's just shameful. Our parents worked hard for their assets. Dad worked 7 days a week in his business. He provided. He feels very upset about these new laws that could legally seize a percentage of his property. It is so stressful. Yes if your up to it, tai chi is great. I don't know what the other one is? Cal :o
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Kim, you have my sympathy, too. i had had the naive belief that Canada was a lot more forward-thinking than the U.S. about a lot of things, but the Hep Forums have been disabusing me of that notion. My mother is 93, fortunately only 8 minutes away so I'm there a lot and the superintendent couple in her apartment building know me and wouldn't pull something like your neighbor did, but there's still that ever-present awareness that something can happen in an instant that would radically change everything. -Gnatty
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Thanks Gnatty. :)
And Cal, yes my rejection of wireless devices in my life and home is health-related. But also a bit of a philosophical/lifestyle choice about living simply and using things that are mechanical rather than digital/virtual (she says while chatting to cyber-friends on an online forum ;) ).
kim
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Haha Kim,
Chatting on the online forum! It's hard these days to live without technology. It's crept into everything. I have a husband who just cannot grasp technology. When he was at uni doing further studies 10 years ago, he was the only one in his group who couldn't grasp the computer. He's got it now, but it's taken a real brain shift to get there.
I admire you Kim. I would like to live in the country, a tree change. But I'd miss the culture of the city too much. I'm a city chick. Cal 8)
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12 days to go! Countdown is on. Never thought I'd get here. Cal :)
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You did get to here and you will get beyond... it is happening Cal!!!
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It's scary Bree, coming out from the protection of the drugs.....Cal
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It's scary Bree, coming out from the protection of the drugs.....Cal
Yes and it's also freedom and new opportunities 8) And feeling much better!
I loved Harvoni and didn't want to stop but I was also ready to stop. I'm thinking 2016 will be a much better year... (looked into my crystal ball;)
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It's scary Bree, coming out from the protection of the drugs.....Cal
Yeah. There's definitely some separation anxiety.
:o Meds/no viral load are definitely, strongly associated in my mind.
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Cal, I felt the same way. I actually didn't want to stop taking the Harvoni. Kind of weird I suppose, but that's how I felt. I made it and you will too
Scout
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I hear you all on the separation anxiety thing at EOT. My mind had forged such a tight link between the pills and my health/life during 12 weeks of treatments that at EOT I essentially ended up replacing the daily Harovni+riba with daily vitamins and iron to deal with my deficiencies that I discovered post-tx. It was like I couldn't stop taking pills. It was scary really because I have never been a pill person in my entire life - not even vitamin pills. My philosophy has always been health doesn't come in a pill or a gel cap or a protein powder. It comes in the food you eat, the way you choose to live on this planet, the relationships you form, the energies you allow into your life, the energies you put out to the Universe. It was scary that in just 12 weeks I had abandoned my long-held paradigm and was now psychologically dependent on pills as a means for saving my life and restoring my health.
But my body knew better. A point came after about 10 weeks of supplements post-tx where my body said very loudly: "No more pills! Stop immediately!" And so I did, and I felt much better for doing so!
kim
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Hi Bree,
Thank god ness you have a crystal ball, why didn't you tell us before? Hehe! Yes my love it is exciting too. But more scary right now, give me a few weeks post and I'll feel better....I hope. Can you check that crystal ball? Cal
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Hi Rlse,
Separation anxiety is the perfect way to explain it. 8) there is security in knowing the drugs are so strong they can get you to UND no problem, it's after for me that I am on shaky ground. I'm ok about that though. I am really liking getter better by increments. I want this so bad. I knew I was ill, but being well I had no idea how goid it would feel! Cal :)
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Scout, thanks fir your enduring encouragement as always . Cal :)
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Hi Kim,
I know what you mean. I have planned my probiotics and various vitamins already. I can see me being the same. I was on antibiotics a lot during tx so definitely need probiotics. I think being on such heavy drugs as well.
I hope too to not have to take supps for long. Without HCV (Bree has a crystal ball and I'm going to clear!) we won't need all the things were depleted in the Vit D, B,
I am still using Alpha Lipoic Acid for my neuropathy. Maybe I won't need that.
I also have prescription drugs fir some other HCV related stuff. Maybe just maybe in time I won't need them either?
I have to get my guy ready to absorb goid food. I gave always been on the Dash diet fir hypertension and it's very healthy.
I have put on weight too, after years if being skinny. I obviously am meant to have more weight on me and the HCV was making me skinny. Cal :)
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I wish this stuff wasn't so expensive.My blood pressure hasn't been this good in a long time. :)
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Hi Bill,
Yes my BP has been god to low during tx and I've had my BP meds slashed by 2/3rds.
My tinnitus has gotten worse dye to the ribas as well. It came on during last tx. Anyone else? Cal :)
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Hi all
7 days left today. Cal :)
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single digits... almost home! 8)
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And the countdown has begun Cal....it an exciting time
Scout
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Cal! You are nearly there!
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(http://i63.photobucket.com/albums/h124/Janie_k/number-181539_640_zpsu3ufa0md.jpg)
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Thanks Girls,
Live the bug 7 Phily! It is exciting. But I'm still scared and excited.
Cal :)
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SIX DAYS LEFT
(http://i63.photobucket.com/albums/h124/Janie_k/cube-665389_640_zpswy2wwjin.jpg)
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Oh Phily,
That's a beauty! Thanks friend. Cal :)
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Tic toc, tic toc. Five days to go!!! 8) 8) 8)
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Hi Else,
I like your security blanket metaphor. I get it! Cal :)
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Oops - missed a day sorry! It was my school's end of year Presentation Day. Frantic doesn't begin to describe it.
(http://i63.photobucket.com/albums/h124/Janie_k/Charles_Demuth_-_Figure_5_zps2xkayhzs.png)
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And now today!
Four leaf clover for luck!
(http://i63.photobucket.com/albums/h124/Janie_k/klee-345135_640_zpsm6ouxlwx.jpg)
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Oh thank you Phily,
4 days to go. Wow it's real :P Cal
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Yep... real awesome!!!
Just wanted to say how much I loved "The Happiness Trap". It was life-altering for me. I guess I was just ready to re-sync what I had already been into. I got several to give as Holiday gifts for a couple of friends. I also downloaded the Smiling Mind app but haven't used it yet.
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Darn it I'm missing all the excitement.I hope somebody recorded it so I can catch up.Way to go Cali Girl.I've had a long week and I won't be around Friday or Saturday.Going to Orlando for a concert but I'll check in on you. :)
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Hi Bree,
I'm so glad you are spreading the love of The Happiness Trap. It's an excellent gift. It is life altering. It certainly helped me through tx. It is truly amazing. I hate self help books normally being a Social Worker, but this one I buy for friends and family, to help stop their suffering. Cal :)
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Hey Bill,
What concert are you going to see in Orlando? Cal :)
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Going to see Trans Siberian Orchestra Cal.A lady friend and I have been going every year since I got back from Ireland in 2009.That's my Christmas present to her every year.They are amazing,and some of the best musicians I've ever seen.I can't wait.:)
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Bill,
That's sounds amazing. Have a great time with your friend. Cal :)
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This is the show they're doing this year Cal and the one I've been waiting for them to do.This is a long watch so you can copy the link and enjoy it later.Their shows are simply amazing and they do all of this in concert.I mean the entire stage show is unbelievable. 8)
https://www.youtube.com/watch?v=eAODpLKZULA
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I can't post a pic on the road as I am, but I am thinking of you! Three more days. :)
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Hi bill,
That link didn't work for me, but I watched some others videos of them. Fantastic. I've never heard of them, I don't believe they've toured Australia? May be wrong. What a show. Cal :)
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Thanks Phily,
I appreciate that you ate thinking of me,so kind of you. Cal :)
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So excited for you!!! 8)
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Thanks Else,
Don't forget to have a tea and bikkie ready for me on the other side ;D Cal
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Found you and your almost finished well done Cal ;D
cheers
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Warm tea and bikkies ready. ;D And we have storytime and naps here.
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Doesn't Gilead help when you have insurance? Maybe it's once insurance approves. I know I got the discount from them for the Sovaldi. Total cost after insurance co pay and the discount for the Sovaldi and Ribavirin is $155 a month. I am so thankful to be able to get it at that price.
I know I had been making plans to go to India if I had not gotten approval. I think the trip and everything is more around $3K USD. Also, India has a separate Passport (or VISA, I forget which) that has to be applied for as well as what we need to travel. If she is going to go this route I would make sure you research thoroughly. And,Jeffries is the name I was looking at also.
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Is it one day more Cal? Could it be?
I wrote this when I was on my last day:
http://blogs.hepmag.com/gracecampbell/2015/09/hepatitis_c_one_more.html (http://blogs.hepmag.com/gracecampbell/2015/09/hepatitis_c_one_more.html)
Enjoy your One Day More.
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Hi Westy, ,
Yes here I am. 8) last pill this evening. Wow that seemed like forever. As soon as the ribas started to leave, I started to feel better. Good to see you on here. It's a great forum, really supportive people. Cal ;)
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Hi Rubi,
That is so cheap. I'm glad you were able to access them. Cal :)
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Hi Phily,
Thank you friend,
I am happy to be off this tx and just hope that this is the last x I have to do. It knocked me around as you know. I am happy to leave it behind. Now to defy the odds and SVR . I'll see you on the other side......cal :)
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Cal, you made it....good for you! I know it seemed like forever for you since you watched many people complete their treatment wondering if your day would ever come Well, it's here....you survived....and now your gonna remain virus free! We all are. I am so grateful to the group here on this forum that endured my messages and gave me support during my treatment. Jan 15th is my 12 week EOT test and I hope to be able to stand up and scream "Hepatitis....Go Fuck yourself...I AM FREE!" I took off January 18 to January 26th from work...because that week is gonna be about me! If I relapse...that week will really be about me! LOL ...I am pretty confidant though. Cal, I so...so hope that things start making a dramatic difference in your life now that you are finished with the treatment
Scout
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Going to see Trans Siberian Orchestra Cal.A lady friend and I have been going every year since I got back from Ireland in 2009.That's my Christmas present to her every year.They are amazing,and some of the best musicians I've ever seen.I can't wait.:)
Bill, I am going to go see Trans Siberian Orchestra on December 26. I am very excited, this is the first time that I have ever gone to see them. I have heard that they are absolutely fantastic
Scout
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Hi Phily,
Thank you friend,
I am happy to be off this tx and just hope that this is the last x I have to do. It knocked me around as you know. I am happy to leave it behind. Now to defy the odds and SVR . I'll see you on the other side......cal :)
Congrats on finishing, Cal! It's been a long haul. And the ribas sure don't make it any easier.
I believe you will achieve SVR this time! Am holding you in my thoughts. :)
kim
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Ta-da!!! 8) 8) 8) Congratulations!
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Your numbers are looking good Else!!!
Scout
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Cal... you are a trooper! You have really hung in there. My wish for you is that you take this new time in your life to nurture yourself as much as possible and envision the best outcome ever! 8)
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Your numbers are looking good Else!!!
Scout
Thanks Scout! Still waiting for my viral load test. :o
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Wow thanks Scout,
Yes it was a long haul only coz they told me I'd be having more mid stream, that made it seem like forever. But yes I made it. Yep Hep C go fuck yourself, I hope we can swear on the forum ! But that's how we all feel!
Not your 12 weeks EOT in January seems to have flown by, but of course it didn't for you!
I have lots of healing to do now. But I will do it happily now with a clearer mind and healthier body and more energy yes! Cal :)
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Thanks Kim and a Else,
I did it 8)cal
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Hi Bree,
Thank you for reminding me to be positive in your special way yesterday you do. You are a dear. Cal :)
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Congratulations on finishing Cali.Now you can relax and do some healing. :)
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Very happy for you Cal. Long time on the chopping block for you. When you look back to when you started you can say something like; " that was many, many 'sides' ago my dear." Good luck moving forward. Now you can post about getting the riba out of your system. Good riddance when you do, hey? Thanks for the humor along the way. Many newbies to come will benefit by reading the words of the legendary "riba queen" CAL.
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Merry early X-mas to You and Happy EOT as well. Hopefully it's all sunshine and blue skies from here on out. We don't need no more stinkin Ribas! Play it cool and rest up little one. Oh Yea, by the way---Maybe I can have My phone back now ;D :-\ 8) 8) 8) 8)
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Congratulations on finishing Cali.Now you can relax and do some healing. :)
Hi Bill,
Thanks friend. But what is tis word, how you say "relax"? Cal ::)
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Hi Tommy,
NO you can't have your phone back. I am still to cross to the other side yet.I keep forgetting! Derr........Cal :P
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Hi Beto,
Oh the riba Queen. I shall wear that crown proudly. I always try to wear a rown around the house anyways....
Yes get those friggin ribas out of the system. Can't wait to feel normal again. I just saw my GP and she said that my HB and Neuts were back to normal.! That's after nearly 5 weeks post riba. SO I am happy about that. Also returned the best ALT AST ever. 17! At last. My ALP is getting higher and way too high so I am meant to have an ultras sound on the liver, gall area, so I'll do that after Christmas.
I started probiotics 3 days ago and my stomach is settling nicely.
Yes many many sides ago Beto! Cal 8)
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Cal, that's wonderful news. EOT. glad to hear those magical letters from you. Now to move on, and reclaim your life. And about the rage queen title, all I saw was you being slightly perturbed, never raging ;).
Chuck
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Cute Avatar Chuck!
Slightly perturbed mmm I don't think my family would agree there! I punched my sons door of his bedroom out of sheer frustration (over nothing) and I punched the kitchen bench in a frivolous argument with my other son. I hurt my hand that time! Cal :)
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Don't feel bad cal, my best friend did the same thing except she broke her arm. Kids can be frustrating....at any age
Scout
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Hi Scout,
Feel like I haven't spoken to you in ages. I am coming to the other side. I finished last Sunday. I keep forgetting to make a thread over there. Doh! Cal :o
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I haven't posted much in te last few weeks. I have been working a lot and both my children's birthdays have been in the last week. I went for a doctors appointment last Wednesday and he asked if I was getting any exercise....I showed him my I phone that tracks the number of steps I take each day and the previous day at work I logged 32,563 steps. He just about shit. I said, does that count? LOL
Scout
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Missed you,
You sound really happy and healthy. SO good to hear from you. Cal :)
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Australia's Christmas Present.
Thousands of Australians will rejoice at today’s announcement by Federal Health Minister Sussan Ley that a range of curative breakthrough hepatitis C medicines* will be added to the Pharmaceutical Benefits Scheme next year.
Hepatitis Australia CEO Helen Tyrrell said that it was “simply terrific” that new ground-breaking medicines for hepatitis C would be subsidised on the PBS from 1 March 2016.
“Last week, we were incredibly disheartened that the Mid-Year Economic and Fiscal Outlook (MYEFO) announcement did not include funding for new hepatitis C medicines, but today we are overjoyed that the waiting is almost over,” Ms Tyrrell said.
“So many people have been anxiously waiting for this announcement. This is wonderful news and it is such a relief to have an end to the uncertainty,” she said.
“We congratulate Minister Ley who has delivered on her commitment to list these medicines as swiftly as she can and to make them available for everyone with hepatitis C, which hasn’t been achieved elsewhere.
“Christmas will be a particularly joyous time this year for many living with hepatitis C as they can now look forward to the prospect of a cure and a much healthier future,” Ms Tyrrell said.
“The Turnbull Government is to be congratulated for showing leadership and investing in these game-changing therapies which represent the greatest innovation in the treatment of the hepatitis C virus in a generation,” she said.
“If we can combine access to new treatments with improved access to needle and syringe programs across the country and in all populations, we have a real chance of preventing deaths and eliminating hepatitis C as a public health concern within a generation.
“We look forward to 2016 as the watershed year for hepatitis C in Australia as more people are treated and cured and we start to arrest spiralling rates of liver disease,” Ms Tyrrell added.
230,500 Australians are living with the hepatitis C virus which damages the liver, leading to liver scarring (cirrhosis), liver cancer and liver failure. Each month approximately 250 people with hepatitis C develop serious and potentially life-threatening liver disease or liver cancer.
New hepatitis C therapies have exceptionally high cure rates that exceed 90 per cent, shorter treatment durations and avoid the debilitating side-effects associated with existing therapies.
“We urge all Australians with risk factors for hepatitis C to get tested and talk to their doctor about new treatments,” Ms Tyrrell concluded.
*sofosbuvir (Sovaldi); sofosbuvir and ledipasvir (Harvoni); daclatasvir (Daklinza) and ribavirin (Ibavyr).
We did it!
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Already done two interviews this morning. Now I'm heading home to remove my makeup, good clothes and bra!
Best news. Just the best.
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Congratulations Australia!!! Wonderful news.
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I'm very happy for you all down under.I'm just checking in.I've been trying to pass a damn kidney stone for the last week and it's about to drive me out of my mind.I'll be back when it's over.I can't even think right now.
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Been there Bill,
I have dealt with stones on two occasions but have not had them in about 25 years. I'm surprised that more heppers on the new drugs have not had the issue. I have observed that they can rear their ugly head when one has suddenly tripled the amount of water they drink after a period of under hydration. One thing that has been gospel on this forum is HYDRATION!!!
They hurt like hell don't they? I'm sure you are drinking cranberry juice and taking walks, so I won't offer up any advice. You just have to pass them and deal with the pain. I know that there are ultrasound treatments that can break them up (this was not available to me when I had them). The first time I was hospitalized because I had six rather large ones. They gave me next to no pain drugs because at the time all young people were considered addictive.
Souldier through Bill...another drop in the bucket, hey.
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Sorry Bill, (and Bet)
What auger. I have to have an ultra sound for gall stones. Very common in heppers. Bloody hell this fricken virus! Cal :)
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Hi Phily,
Thanks for advocating for us all. I am not sure if this was you on the ABC news? Dark hair in a Doctors office? Cal :)
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Not me Cal, mine was just a F2F interview on local tv and a radio interview on ABC.
http://www.nbnnews.com.au/2015/12/20/hepatitis-c-cure-for-all-australians/ (http://www.nbnnews.com.au/2015/12/20/hepatitis-c-cure-for-all-australians/)
and in case you're wondering what I'm doing with my hands when I'm doing downward jazz hands, I was just chatting with the interviewer about my last trip to Canada and describing (obviously very dramatically!) about going dog sledding in Jasper
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Blimey!Where'd all these Aussie conga line dancers come from? :)
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Australia BillT! :)
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Oh well spoken and well said Phily!
It is the best gift to our community ever. Jubilant! :) cal
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I am just wondering what dose of ribaviron other 1a's on Veikira Pak are on?
I am on 1200mg a day (600 mg twice a day). I have been feeling really crummy the last 4 or 5 days - completely weak and breathless, find it hard to stand up for more than a minute.
My HMG is not too bad (10.6) but my nurse practitioner thinks there is possibly a potentiating effect with the riba's and my pre-existing airways disease. So, she has got onto the gastroenterologist (I don't have access to him), who is about to go on 2 weeks holiday. He said to reduce it to 800mg a day - but I have 600mg tablets and live 200km from the prescribing pharmacist, and it's evening. When I told her that the tablets I have are 600mg, she called him back and he said - make it 600mg.
I am happy to be hopefully relieved of the side effects, but I'm concerned that this is too great a reduction - and that he just settled on that because it was too much trouble to organise the 800mg. I am just beginning week 4, of a 12 week course. I wondered if I could have your feedback, what do you think? Will it still work?
Thanks people,
Hazel
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Just to allay your concerns, my specialist (Greg Dore) reduced my ribavirin to 400mg from week 2 onwards due to the same issues you are having. I cleared the virus. 24 week Tx.
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Hi Hazel,
I'm not a doctor,and never will be so take this for what it's worth.Cut the pills in half(You can do the footballs if you turn them sideways).If they're round you can get a pill cutter from any pharmacy for just a few dollars. :)
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Thanks Philly and Bill,
Your responses did the trick!
I didn't cut them Bill (though I considered it) as they are film coated, but the fact that your specialist (who I trust!) Philly, reduced yours even lower and earlier, reassured me, so I finished the day on the old regimen and have moved to the new.
Congratulations Bill!
Happy travelling Philly!
H.
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Cal,,,,I made it. You will too. When is your test date?
Scout
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SCOUT!
Fecking unreal! I knew you would! Thank you for thinking of me. You are such a good person. I get the results of my 4 weeks eot on Thursday. I'm 5 weeks EOT now. Very fatigued. I am also waiting to see what happens about these gall stones. I get the thyroid removed in March. I am sure this will all make a different to how I feel. Thanks darling girl for your caring. Salx
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Cal? Come out. come out where ever You are!!! Check out My nifty new signature and posts! I have been missing You on My phone lately!!!
BTW, have You heard from BBC lately???? Hope You are getting better. Everytime I think things are getting leveled out, something new pops up! But---- We shall overcome!!! Right? Get Your rest and get healthy! Be chatting with You soon!
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In response to the question about Ribavirin dose. I'm on 600mg in the morning, and 400mg in the evening. I weight 70kg. Hope this is helpful.
And my fingers are crossed for you, Cal!
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Thanks AussieRosa, we are quite close in our stats and treatment type and dates. Wishing you well.
Hazel
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Hazel, yes we are! Wishing you all the very best too. :D
I've been reading a lot of back threads and getting to know people a bit that way. Looking forward to getting to know you better and travelling along the path with you.
My viral load wasn't scanned into the nurse's pc when I picked up the meds yesterday so I won't find out what it was before starting treatment for another 2 weeks when I see her again. I'm really scared about side effects so possibly prone to panic at the slightest sign of something. Silly me! ::)
Rosa
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Congratulations on making the EOT Scout.I took some time for myself to put things in perspective and relax.We both need to get to SVR12 but I think we're done with this now.We've got everything but our diploma's. 8)
Cal I hope things get better for you soon.I saw my primary care doc the other day and got a consult to get this hernia fixed.Now that my LFT are normal there shouldn't be a problem.I don't know about you but I'm getting damn sick and tired of doctors. :)
AussieRosa,
Don't worry about anything until there's something to worry about. ;)
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Hello my dear forum friends,
I am sorry I haven't been posting lately. Post tx has been a bit rough. I never did make a thread in post tx. SO I may just do that now. :) Cal
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Cal, it's so good to hear from you again -- a lot of us were asking each other if anyone knew how you were. Sorry you've been having a rough time post tx. Okay, I'll look for your new thread.
Gnatty
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Welcome back Cali.I was just thinking about you and wonder if you still had a pulse.We miss you. 8)
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SHE IS BAAAACK!! ;) ;) I got your message. Wishing You all the best. It pains Me to know that things are so rough post Tx, because it was so tough on You during Tx. :( :( :( I am so glad that You could visit for a while. Hoping that Your Med. team will get You back up and going soon. You really had us worried for a bit. You get Yourself rested and post when You feel able ;) ;) ;) All of the DRs. and tests, poking & prodding, tests & labs can take alot out of You. Not to mention the post Tx. malaise that You have to endure :P :P. Glad to see the results in Your signature though :) :)
When You feel down , just remember that Your extended family and friends out here in Heplandia around the world are thinking about You and wish You good health and wellness A.S.A.P. :) :) :) :) Keep Your head up and keep on truckin' 8) 8)
I STOPPED FIGHTING MY INNER DEMONS! WE ARE ON THE SAME SIDE NOW! 8)
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I STOPPED FIGHTING MY INNER DEMONS! WE ARE ON THE SAME SIDE NOW! 8)
LMAO!!! Dang it, Tommy. Most quotable poster on the board. ***can't stop laughing*** ;D ;D ;D
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My demons and I bid You a fond hello My good friend. It sure has been quiet lately, but it seems to be picking up 8) 8) 8) 8) 8)
Have You seen My chainsaw? ??? ::) :-[ :-X
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Well then, I guess I have to chime in now 8) Cal, love you, love you, love you. I know there is more and more light waiting just around the corner... I can see you smiling and basking in it! I'll send you a message...
And, everybody else, Tommy, Gnat, Else, Bill (anyone seen Beto?)... here we all are... like old hometown week!
I've been busy, lots of good work and some med stuff, not really treatment related. this and that, this and that. Anyway just wanted to say I love my demons! They wear sunglasses. They are menehune demons. ha.
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So good to hear from you again, Cal!!! 8) I know exactly what you mean about post-treatment being rough. I too had a lot of problems post-tx.
I do think that these post treatments problems some of us experience will all clear up eventually. So patience is the key word.
I am finally in a position where I am able to feel some benefits of No More Hep C! Particularly more mental clarity and better mental functioning in general.
So hang in there, Cal. And keep on posting! We want to know how you're doing. :)
kim
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And, everybody else, Tommy, Gnat, Else, Bill (anyone seen Beto?)... here we all are... like old hometown week!
Well there you go, Cal! Your thread has always been the best hang-out on the forum!!! ;D ;D
Love, support, mythical creatures (except for Bree's - those are real!), chainsaws and what have you. 8) 8) 8)
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Oh boy,
My old partners in crime! It is truly appreciated that you are all still there for me and each other. I'll get there I promise. Cal 8)
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That's the spirit! Cal, now that you've resurfaced, would you happen to know how Marianne is doing? I seem to recall that you've Skyped her in the past.
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Glad you made a post cal, your fellow heppers were anxious to hear that you are ok. Keep in touch, and I hope you get better every day. Stay strong and positive, even though some days it can be hard
Scout
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even beto cares Cal... ;)
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I feel a conga line coming on. 8)
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Too bad we are from all over the world, I would really like to meet some of you that I have been talking to for the last 7 months
Scout
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Man, Cals' Place just started rolling again! :) Hey Cal, New name for a new thread------Cal and the Gang! ;D
Hey Scout! How Ya doin'? That would be cool. To bad all the medical crap drains the bank account so fast :P
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I'm still serious about a Hawaii get together later this year, for real. I have some ideas that might be of some help...more will be revealed once we all get a little more well and ready to look at possibilities. Consulting with menehunes now... But they take their sweet time to pitch in! 8)
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Hey Cal, check in time! Don't make Me come over there and find You young lady!!! :) Hope You are feeling better. Check in when You can. Just a line to say hello and thinking about You!
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Any body talk with Marianne ( byebyec ) at all lately.
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Tommy, on March 24 Cal did report SVR12 and upcoming thyroid surgery: https://forums.hepmag.com/index.php?action=profile;area=showposts;u=18408
Cal, I, too, hope everything's going well and you'll check in soon.
Marianne last posted on Nov. 2. I wish I knew how she's doing.
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Back on Dec.7, Cal posted that she had skyped with her. Said she had reached EOT and was waiting Labs. Also said she was having a rough time post EOT. I believe she had a hospital stay shortly before that with a bad gall bladder attack. I sent her a couple of PM's but no reply. Last time I checked Her avatar picture was gone and replaced with a standard one.
I knew about Cals' thyroid procedure coming up. Didn't want to bother her as she usually checks the forums even if she doesn't post. I was hoping a shout out might get a response.
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I forgot her avatar name
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byebyec and her picture.