Author Topic: Ribavarin--why didn't they tell us? (Read 35124 times)

DesertGuy · « **on:** October 19, 2014, 08:14:21 am »

10 yrs ago the VA offerred my the treatment with Iterferon and Ribavarin, and before starting treatment I went to a few group mental heath sessions. This was all it took for me to say no to the treatment. Half of the people looked half dead--many divorces during treatment--and only a 50/50 chance of cure.
Everyone said the interferon was the culprit.
When I was informed of the new treatment this year, my Gastro told me no Interferon side effects--said nothing about the ones caused by Riba.
And at the same time told me of new drugs on the way.
Ok--in December of 2013, all this new stuff was approved--knowing more on the way, so it looks like to me--all of us going thru these Riba side effects could have been put on hold for 10 months?? I know I would have waited if my Doc would have told me about Riba Rage.

rainbowray · « **Reply #1 on:** October 19, 2014, 08:43:01 am »

Hi Desertguy,
MY Dr. told me I could wait, but the Hepc was accelerating so in 6 months damage could get much worse. Holding the effects of hepc was kind of worth the try. But the side effects of Ribavirin were played off as not that bad. Also others in his treatment were doing Ribavirin and he said they were doing ok.
Later I asked and he said some were having issues now. So the main blame for some of our decisions is ourselves. I should have found a different Dr. willing to
try for Olysio for me, but if my hepc symptoms were not accelerating, I would have left him in a hot second. And if I really knew about Ribavirin instead of believing the jabber, I would have left for another Dr. I'm more mad at myself for believing Drs. who's heads are not in the right place. He should have at least wanted to try for the Olysio. We're at the mercy of a medical system that wants the buck more than to live by the Hippocratic Oath. Every Doctor when asked about Ribavirin should say the truth, it is a nasty drug.

DesertGuy · « **Reply #2 on:** October 19, 2014, 10:26:33 am »

Thank you for agreeing with me---I feel the same way--The blame is on me for trusting a Dr. that I had just met----I should have ran out of his door when he told me my treatment cost--he already had figured his profit from signing me up I'm sure----I already had cirrhosis and 6 more months would have made no difference in my condition---this ribavirin has done so much damage to me physcologicaly that now I am faced with the recovery from that. Before I started treatment I was a regular guy. Now I am a recluse--unemployable--and my wife is not a happy person dealing with me. I just read a post that the VA was using the same drugs now---honestly I would have preferred dealing with them( They were not using solvaldi when I started) as treatment from them has never been about money and followup has always been there. I posted last week that I had issues with my meds coming--well after voicing my concern to the doctors office and finding out that they were totally unaware that THEY had let my coverage lapse and that they were ALSO not getting paid within 3 hours I had calls from both the pharmacy and Insurance that coverage was continued until april---At this point my wife and I are arguing about wheater or not I step foot back in this guys office. I DO NOW have all of my meds in hand, and I see no reason to see my doctor again. He has told me that results mean nothing until 12 weeks post treatment, so in April I will let the VA pull my viral load and go from there.

Bucky · « **Reply #3 on:** October 19, 2014, 10:39:54 am »

My IDS knew that I was totally against I&R treatment or any part of it because two of my friends tried it and died while in treatment. I can remember when Interferon first came on the market as a cancer drug and it was so toxic it was taken out of use. I applaud everyone who used both or either one of these meds in trying or ridding themselves of HCV. Sadly, some doctors are so busy that they can't take the time needed to keep up with all the negatives of meds or don't want to fight with an insurance company over approval of an off label use.
I suffered a years damage waiting on Olysio but it was worth it. I know that I was very lucky to have a doctor who stayed on top of these "blockbuster" meds and called me personally when she could got them approved for me. She did this without my knowledge, so I think most people will understand why I cried like a baby when I got the news. I recently visited the parent(s) of my two close friends who died because of I&R and told them about the treatment I was on, how well it was working and how incredibly expensive it was. They cried with happiness for me, but I felt so guilty because they lost their children and there I stood with a very high chance of being cured.
Thankfully a lot of people finding this forum are becoming well informed and are rejecting the old meds and insisting on the latest new ones. I trolled this site a long time before I joined just reading and waiting. My IDS actually now provides the address of this site to her other patients because of the information and reassurance I found here.
Well, I kind of got off subject and got a little personal this Sunday morning here in Western NC but the sun is shining brightly and the leaves are so beautiful. My world has a new prospective now without the brain fog from the Dragon.
Bucky

lporterrn · « **Reply #4 on:** October 19, 2014, 11:41:01 am »

Desert Guy - I went through 3 hep C treatments - one with only interferon, one a full 48 weeks of peginterferon + rib, and the last was basically Harvoni + ribavirin. I was shocked by how tough ribavirin was. My theory is that without interferon to depress the body, the side effects of ribavirin are intenser. Granted, I was 10 years older, but I was not sure I could have done any more than the 12 weeks I had done - and I am a trooper.
I was sooooo relieved that Harvoni was approved without ribavirin. Now we have to find something better for the other genotypes.

Bucky · « **Reply #5 on:** October 19, 2014, 11:50:53 am »

Quote from: lporterrn on October 19, 2014, 11:41:01 am

Desert Guy - I went through 3 hep C treatments - one with only interferon, one a full 48 weeks of peginterferon + rib, and the last was basically Harvoni + ribavirin. I was shocked by how tough ribavirin was. My theory is that without interferon to depress the body, the side effects of ribavirin are intenser. Granted, I was 10 years older, but I was not sure I could have done any more than the 12 weeks I had done - and I am a trooper.
I was sooooo relieved that Harvoni was approved without ribavirin. Now we have to find something better for the other genotypes.

Lucinda, You do know that you are a hero to many of us here don't you?
Bucky

lporterrn · « **Reply #6 on:** October 19, 2014, 06:18:57 pm »

Oh Bucky you are kind, but I am just a loud-mouthed know-it-all. I am cured, and now those with hep C are the heroes.

zeena · « **Reply #7 on:** October 20, 2014, 11:46:47 pm »

dear Lucinda,
this is the only place i can be as honest as i am capable of being about hep c .i know i come off shallow or ironic but i am not.my heart is touched by the support given here,i have my husband read desert guy to understand how riba takes me into manic moods.my job just put pressure on me, and i am reeling from the stress, though like hepc53 i am selling because i am not on antidepressants, there is a vein of nervousness and fear which runs through me, which i try to stop with a little beer or a little wine , and that sends me into liver pain, bladder pain ,etc.i have insisted from my family to not allow any liquor in the house, and i hope this time it sticks.Lucinda, you have taken on a role , the i am cured... we all want that, i always thank you for your feed back and the time you spend here supporting the future i am cured.i have never been a good patient, my docs are a little tired of my complaining and questioning, so thanks for making a place i can feel comfortable in, and not ashamed of this disease.

lporterrn · « **Reply #8 on:** October 21, 2014, 12:04:57 am »

Zeena - I was having a very hard day, until I read your post. Thank you. I will sleep well tonight. You have no idea how much some kind words from a "stranger" can change everything.

Tess1971 · « **Reply #9 on:** October 21, 2014, 11:25:58 am »

I agree about the ribavirin. I am in my 9th week and the ribavirin seems to be bothering me more now….nausia comes and goes, fortunately briefly, itching is now coming back, even my mouth feels irritated. I am getting more very fatigued like I did in the beginning and not sleeping as well again. I also am having the boohoos easily.

rainbowray · « **Reply #10 on:** October 21, 2014, 11:43:35 am »

Hey Zeena,
I think this is the place to complain and vent and feel safe about things you don't tell anyone. The one thing you should not do is drink alcohol , it is the worst thing to do
even after you are cured. Now if you are telling your Dr. you have used alcohol, you are jeopardizing your treatment. Don't say anything, I have friends who were honest to the Dr. about it, and then their promise for treatment was changed. The best thing is wisdom, and stay away from it completely. If you believe your Dr. is cool about it I still would not say much. Also, it is my experience to not complain much, people are good at hiding their stigma attitude, and your cooperation or perceived cooperation is vital. You need to be CURED.
Tess,
Yes, Ribavirin sucks.

DesertGuy · « **Reply #11 on:** October 21, 2014, 12:29:14 pm »

56 days to go---in tears easily--finding it hard to get past the mailbox daily---if more hair falls out, will just shave my head
I envy the people on 12 week treatments, have lost track of what week I'm in, just know 2 bottles of Sovaldi and 8 of that Riba are staring me in the face and then I am headed to northern New Mexico to spend a few days in the mineral baths of Ojo Caliente www.ojospa.com to start the detox process to jumpstart getting this Riba out of my system

zeena · « **Reply #12 on:** October 23, 2014, 12:27:08 am »

the time has come, the walrus said of cabbages and kings. 4 and a half weeks. my last bottle and pack have arrived.my doc says he is not seeing any problems after treatment is over with others, he always wants to give iv to hydrate me. ii cant deal with problems that i dont know the answer to. cant open the mail. its time for self care now, the last stretch.its time for self care. i like reading that.time for self care.

lporterrn · « **Reply #13 on:** October 23, 2014, 11:05:17 am »

We need a treatment retreat house. Have you seen Karen Hoyt's blog? http://blogs.hepmag.com/karenhoyt/2014/10/healing_hcc_liver_ca.html

Ronaldo · « **Reply #14 on:** October 31, 2014, 12:39:55 pm »

I feel for the posters doing older treatments, I feel really blessed to get the Sovaldi and Olysio. I start my last 4 weeks today.

I have a question just to understand. I have already posted that I was negative after 5 weeks. I asked about why the differences in viral loads, I have read some in the millions. She told me it was normal for some to be lower, and it wasn't what they were really looking at to determine cure. She sent me to the lab and said the eight weeks lab didn't do the viral load. My question is she correct or did I understand it wrong? I don't have the results of 8 weeks for a few days. thanks.

lporterrn · « **Reply #15 on:** October 31, 2014, 01:11:55 pm »

Ronaldo - she is correct.

Ronaldo · « **Reply #16 on:** October 31, 2014, 02:46:05 pm »

Thank you Lucinda

Jazz · « **Reply #17 on:** January 05, 2015, 08:33:11 am »

Hi all! Well I know this thread is dated, but I just want to also add my voice of complaint.
I too may have jumped just a little too soon when I accepted the invite to join a trial, one arm being Sovaldi and Riba 24 wks, the other Sovaldi GS-5816 combo 12 wk course, which I've read has minimal sides and 100% success with G3s. Unfortunately I was randomised the Riba 24 wk arm.
Anyway here I am week 12, still anaemic from the Riba (baseline Hgb 135, by wk 3 my Hgb had dropped to 96), still tired, teary, depressed and distressed!
My doc was aware I never wanted to take the old Tx, I/R, I hoped he might have been able to influence the trial arm I was to be allocated, as I told him and the trial nurses that I would become anaemic on Riba, to which they replied, Riba doesn't cause anaemia - yeah, right!
My doc is a very good person, a good communicator and thought of me when this trial became available, so I don't wish to appear ungrateful. But the fact is I still have 12 wks tx to go! Totally depressed at the thought of it.
What they don't tell you about Riba, indeed!

Thanks for the thread, it felt good to get it out.
May our ordeal by Riba be rewarded with SVR forever!

rainbowray · « **Reply #18 on:** January 05, 2015, 09:46:19 am »

Ribavirin is now owned by Schering-Plough, who owns one of the alpha-interferons (Intron-A) on the market.

http://www.hepatitiscentral.com/hcv/whatis/ribavirin.html

If Schering-Plough is in the mix it should be known that the Interferon they market is involved in many past lawsuits. It should be revealed to all you get Ribavirin prescribed before making a decision. In my opinion, they are not to be trusted.
Sorry for the negative post, but 3 people have gone thru this treatment on this forum with Gen 3, and failed. DesertGuy is waiting post treatment Viral Load results.
I am 1B and waiting results, and feel very Quizzy about it.
If your post treatment health is at jeopardy, and they will give you the other treatment anyway, it is food for thought to stop. Some on this forum have stated their Doctors will not suggest Sovaldi/Ribavirin anymore.

Tess1971 · « **Reply #19 on:** January 05, 2015, 11:43:16 am »

Unfortunately some of us that are Geno 2 have little options. If my SVR does not maintain I maybe stuck for some time as all the newer treatments are for Geno 1.
I can attest that the riba really is a challenge and since treatment has ended I do feel lousy on and off with flair ups of stomach and skin issues. I feel really good one day and then a couple of days later I feel really crummy with aches etc….As for anemia I only went down to one point below normal, but, I only had to do 12 weeks and am not sure I could have handled it longer as the last two weeks were rough.

RWEHEPC · « **Reply #20 on:** January 05, 2015, 11:59:45 am »

Well I am on Day 1 with Sovaldi and Ribavarin. I was told that the side affects are very minimal from my doctor, but from what I am reading here I'm a little scared I must say. I don't like my doctor and would have gone to another if it wasn't for the fact that I want this done with. So many denials from the insurance company and the doctor never sending all the information requested by them. I had to play middleman between the insurance company and the doctor.

I'm already crazy enough without Ribavarin, bipolar disorder 1, and then hep c.

I'll let you know how I am doing, so far i have only taken my morning dose of Solvadi and the Ribavarin (3 200MG twice a day).

Tess1971 · « **Reply #21 on:** January 05, 2015, 12:19:31 pm »

I found that leaving a small gap between taking the sovaldi and the ribavirin helped. I took the sovaldi first with my first cup or coffee or tea and some toast etc and then about a good hour later before I took the ribavirin with second cup and more solid food like boiled egg and slice of cheese. Yogurt in mid morning helps a lot if stomach get affected.

DesertGuy · « **Reply #22 on:** January 05, 2015, 01:45:19 pm »

Well get ready for 24 weeks of trying to figure it out. I was a little nutty when I started, bitched about my Dr. the whole time. If you are not on anti depressants at this moment, you probably don't want any. Go to the list of side effects for riba,print it out and check them off as they happen. If you are lucky you will only have a few. If you don,t like your doc, just grin and bear it. His office has done the paperwork. Don't worry too much about your numbers, because you are getting ready to take enough drugs to knock anything down. The important ones are 7 and 9 months away. Hell--I still don't know anything permanent and I am 3 weeks post treatment. Do I feel better? Compared to what? I have to admit to the positive things I have noticed. Before treatment I had violent vomiting episodes that I was trying to figure out why, I have not had one in 6 months. I had frequent lower back pain(didn't realize it was due to liver issues), it is almost completely gone. But as a result of the treatment, I'm very weak, desocalized, my right ear is a constant roar, and my mind is somewhat blank. So my advice, read this forum, take your pills(only a little over a thousand of them LOL), smoke lots of pot(I am a MM card holder), do whatever you feel you need to do for the next 6 months, because nobody around you is going to be on the same(or even close) wavelink, and then you will be where I am, STILL WAITING to see if it worked.

zeena · « **Reply #23 on:** January 05, 2015, 05:23:34 pm »

Hi! rwehepc.
I am almost 8 weeks post tx.and it is possible i have bipolar tendencies, but i am not on meds.My first couple of days were weird. kind of like depersonalization. not scary, just weird. the most important thing is drinking plenty of water, more than eating solid food, water, soups flush the side effects away.i had to go the er , where i was IV>d with 3 liters of saline, and diagnosed with a UTI.tired too.Then it gets achy, but I ran on the beach almost everyday. and after wards the pain would dissapear.and then reappear. i would douse it with water and exercise. Riba rage would appear at times, but the weirdest thing is, that I am noticing I dont think acted any different than *other* people in my RIBA RAGE, I percieved it as out of control.My perception under the meds changed.There were a couple times I couldnt figure out some simple things, but it goes away quickly.Forgive yourself for simple mistakes on these meds.I am noticing a stronger ability to think, to problem solve,My 4 week labs came back normal and UD. and my liver feels better, not swollen.sometimes it hurts, but water and broth, dandelion greens , like artichokes are really good for the liver. any bitter greens help the liver.good luck dont be afraid and make sure your doc looks out for you!!!

RWEHEPC · « **Reply #24 on:** January 05, 2015, 06:45:29 pm »

Zeena & DesertGuy,

I am already on antidepresents (citralopram and Wellbutrin) along with LAMOTRIGINE which I just started for bipolar depression. If I end up withdrawing inward I'll know why. So far today I have only a headache. Not really sure what to take for it besides asprin. I have Midrin for migranes that I periodically get but that contains Acetaminophen so I don't want to use that.

I have been drinking about 32oz of water a day. Is that enough of should I be drinking more?

I'll keep you updated on how it goes.

petra · « **Reply #25 on:** January 05, 2015, 07:28:42 pm »

Hi all,
I have three days left of, 12 weeks of, Sovaldi and Ribavirin.

Sometimes I really do feel the effects quite profoundly:
-When I do manage to get focused on a project... I feel like I have the energy... and then [SURPRISE!]... I don't. It is frustrating and I hope it passes after treatment is over.
-The mildly annoying itching comes and goes and my sleep patterns are erratic.
-I feel like I want to have [and wear] a t-shirt that says "Don't Be Stupid Right In Front of Me" my temper is that short sometimes, and at other times I feel like I just wish I had the time for a good cry.
My partner has been through the same treatment and was SVR at 12 weeks, I started treatment when he was finished. I guess he was the guinea pig. He feels great... better all the time. So three days to go and then no more pills, just 12 weeks of waiting for another viral load blood test. Of course we are [were?] both type 2.
Cheers, Petra

Katie · « **Reply #26 on:** January 05, 2015, 07:50:19 pm »

Quote from: RWEHEPC on January 05, 2015, 06:45:29 pm

Zeena & DesertGuy,

I am already on antidepresents (citralopram and Wellbutrin) along with LAMOTRIGINE which I just started for bipolar depression. If I end up withdrawing inward I'll know why. So far today I have only a headache. Not really sure what to take for it besides asprin. I have Midrin for migranes that I periodically get but that contains Acetaminophen so I don't want to use that.

I have been drinking about 32oz of water a day. Is that enough of should I be drinking more?

I'll keep you updated on how it goes.

Petra: 32 oz of water is only 4 glasses. The recommended amount for a healthy person is 8 glasses a day. I drink a minimum of 1/2 gallon (64 oz) and usually another quart (32 oz). I know it sounds like a lot, but you need to flush out your system and it helps with constipation. I only mention that as some folks here are having that issue. I just started drinking that much with this treatment and now I can tell when I fall behind. I don't sip it...I guzzle at least 1 glass at a time. Hope that helps and here's to a Healthy virus free future for all of us!

Katie

Jazz · « **Reply #27 on:** January 05, 2015, 09:00:18 pm »

I don't have a choice Rainbowray, they will not give me the other trial drugs if I don't SVR and, here in Australia our public health system will not subsidise the new drugs. As well this combo is the more 'benign' Tx for G3. But I agree with you, it is not a benign drug, it's a killing machine, and is super efficient as it in my case, hence the rapid onset of anaemia.

The only thing that gives me hope about my present anaemic state, is that it's a good indicator that I will SVR and then this ordeal will be but a distant memory!

PS. I would be interested in reading the progress of the three fellow G3s who didn't SVR, whom you mentioned. Could you pls tell me their pseudonyms?

May we all SVR! Cheers.

rainbowray · « **Reply #28 on:** January 05, 2015, 11:39:17 pm »

Jazz,
Two of them I remember, coach and Rich1957
one succeeded I found, Krissy
One other succeed, he is one of the bloggers.

there are one or two more, not all Gen 3. That succeeded.
So not all is gloom and doom. It just makes the ride a little more apprehensive.

petra · « **Reply #29 on:** January 06, 2015, 08:29:52 am »

Hi, Rich1957 is genotype 2.

He did unfortunately relapse but according to his posts he was not Type 3!

Jazz · « **Reply #30 on:** January 06, 2015, 08:41:53 am »

Thanks for that.
My hgb has gone down again and I find it hard to cope. My doc said that Riba induced anaemia is a good indicator of tx success. I keep going over and over the odds of me clearing earlier than 24wks. 24 wks is a one size fits all, but seeing Im of small build, very susceptible to the influence of drugs, indeed a Riba induced anaemic, Im thinking 24wks is over kill for me and I don't want to poison myself any more than I have to...

I found this and it has me seriously thinking about stopping at 16 wks.
http://www.natap.org/2013/hepDART/hepDART_15.htm

If you care to have a look, look particularly at the graph titled 'SVR12 Overall and by RBV dose Reduction' and read the second observation, concluding '- Increasing treatment duration to 24 weeks lessened the difference'.

What do you make of that? Is it saying what I think/hope its saying - that 16 wks is as good OR BETTER than 24 wks?
I'd ask my trial doc, but hey, its a trial, that they want me to finish.
Best wishes to all.

petra · « **Reply #31 on:** January 06, 2015, 04:05:55 pm »

Hi Jazz, that study does seem to make a case for shortening therapy. I am type 2 and my doctor suggested a couple of times that there could be a ribavirin dose reduction. If I was in your shoes I think that is the route that I would consider if the symptoms were overwhelming because I would want to keep taking the Sovaldi. It is way easier to find info on type 1 but I did find this "2 month old" news about a new therapy for type 3's, out of Montreal Canada. [There is no other therapy at the moment for type 2]

http://www.bmscanada.ca/en/products/release/bristol-myers-squibb-announces-high-cure-rates-for-genotype-3-hepatitis-c-using-combination-of-dacla

RWEHEPC · « **Reply #32 on:** January 06, 2015, 07:11:28 pm »

Well Day 2 on the Solvadi & Ribavarin. I still have only experienced a constant headache and possibly some tiredness but I'm not sure I can blame it the Riba. I have never had good sleep in the last couple of years because of rotator cuff tear. It was fixed in October of this year so it still keeps me up at night so I cannot blame it on the Riba yet

I am sure I will possibly feel some more, but I have been drinking plenty of water throughout the day.

Tess1971 · « **Reply #33 on:** January 06, 2015, 08:30:09 pm »

I went almost two weeks before I started to feel some side effects. Started with the not sleeping well and then the itching, which I found the most bothersome. The not sleeping remained as an on and off thing. As for the itching, I went through quite a few products before I found what worked well for me. I was constantly drinking water also and woke up thirsty every morning………even woke sometimes at night just to drink water.

kate0b1 · « **Reply #34 on:** January 07, 2015, 05:40:20 pm »

Jazz, I am reading your posts and wanted to add something to it that may help. I am rather small also and did triple therapy last year with incivek (12 weeks) and riba and intef. for all weeks, I was a rapid responder and cleared by 3 weeks and was und all treatment, @ 22 weeks my labs were horrific, I had lost 90% of my hair and had sores all over. (I am in awe of any one who did this for one day longer then that). My doctor (who I love) thought we had this done and we decided to stop. Guess why i'm here on harvioni. I cried all day the day they called to tell i relapsed, I don't know if those two more weeks would have made a difference or not but i've been second guessing this ever since. If its possible maybe he can lower the riba for a while until your labs regroup, i seem to remember from somewhere that it may be an option. and PS I have a super cute wig that i don't need if anyone ever does. (what do you do with wigs after you get hair again anyway?)

Katie · « **Reply #35 on:** January 07, 2015, 05:52:11 pm »

Kate: Glad you don't need that wig anymore and I bet you could donate it through locks of love for cancer chemo patients! My hair grows really fast and I have donated at least 8 feet of hair over time.

My hair is thinning slightly on Harvoni, but nothing to panic about. It is just more than normal shedding and 12 weeks goes by fast. Am already on week 5. I'll be getting my first blood work results tomorrow!

Katie

kate0b1 · « **Reply #36 on:** January 07, 2015, 06:24:13 pm »

Omg Katie please don't tell me that's one of the side effects, I'll start crying right here and now if I lose my hair again! I guess I'll keep her in the closet for a while then (I'm only almost done week three) then I'll look into locks of love that's a good idea, my hair is super short now lol once it grew back I kinda like it being so easy. Are you nervous about your blood work? I almost don't want to get any until I'm done after thinking I won last time.

Katie · « **Reply #37 on:** January 07, 2015, 06:55:53 pm »

Don't panic! Very few have noticed thinning of hair and I took gallbladder medication that did that too, so I must have sensitive hair follicles. Maybe that's why my hair grows about double from other people. It isn't noticeable to my friends and I notice it more when I wash my hair. I am not worried about it.

I am actually excited about my results as I have been feeling better than I have in years! I am sleeping and dreaming (which I haven't been for about 5 years), my fatigue and brain fog is about gone unless I stay up too late or overdo during the day, and then it really isn't as bad. I do have lack of motivation (which is weird for me especially since I feel so much better). My skin is looking much better and I am sure that is partly because I am really hydrating myself with lots of water, and I was bad at that before. I also have a real craving for sugar, which is new, and lately it is a real battle. I really, really want sugar, especially in the evening. Since I feel so much better, I am laughing easier and finding joy in little things that I didn't pay much attention to in the recent past. All of this is so positive with the negative so minor that I certainly can't complain.

With that said, I know my results are going to be positive, but if for some reason they aren't I know they will be in the near future. This is like a miracle drug and am sure you will be amazed by how much easier it is on your system. How long have you been on Harvoni?

Katie

kate0b1 · « **Reply #38 on:** January 07, 2015, 07:37:46 pm »

Ok I'm going to try not to panic yet lol, but I will hold on to my wig just in case! I am just finishing up week three, I feel actually really well, I also have been sleeping well and dreaming a lot, I had a mild headache on and off the first week and on and off stomach issues but nothing that is to annoying. I have been able to go to the gym a few times a week so that's good! I get my labs the end of next week, I'm anxious to get them and anxious to get them, does that make sense lol

Katie · « **Reply #39 on:** January 07, 2015, 08:30:02 pm »

Kate: It does make sense as this is the cure we've been waiting for. Just remember the viral load test can show undetected but doesn't have the final say as it only checks to VL greater than 15 (I think). The true test is after you have completed the treatment where they check with a more sensitive test to see if it has replicated itself during time off Harvoni. Since the cure rate is so good I am not even considering a failure at this point, but it is good to understand how and what they test for. I certainly still don't understand it all but keep trying to get more informed. I'll let you know my results tomorrow. My appt is late afternoon and I am on Alaska time so depending where you live, it may be posted really late. Lots of east coasters on here, I think!

Til tomorrow! Keep me in your thoughts!!!
Katie

Just got this from JoeK999. It clarifies what I was trying to tell you.
Katie,
EOT = "End of Treatment". It seems that the norm today is to do a Hep C test
12 weeks after treatment ends. Some doctors still want to wait for 24 weeks after.
At that point it does not matter which test is done (qualitative or quantitative).
Undetected at the 12 or 24 week after your last dose, indicates the virus is not replicating anymore and thus has been eradicated from our bodies. All of us
want to know why the few percentage relapsed after the EOT. I have seen speculation that the ones who relapsed we're either re-infected through blood or had major immune disorders. I don't know if that is fact or fiction and
I am not in the medical field. At some point there will be more published about it.
In the meantime we all need to finish all of our medicine so we will be cured and we can quit worrying about the dragon!!!

Jazz · « **Reply #40 on:** January 07, 2015, 10:42:18 pm »

Thanks Petra, I'll look at that link, however I'm determined to nail this virus once and for all, this time round - I've got my fighting mojo back! I'm going to positive think this all the way to the finish line! And I'll be wishing you all SVR too!

And thanks Kate0b1, I'm am going to summons all my power to get to 24 wks.

And Katie, I have fingers and toes crossed for you!

kate0b1 · « **Reply #41 on:** January 08, 2015, 06:10:44 am »

@jazz, I'm glad to see you got your mojo back, it's so hard when you feel so bad. Like I said I have been second guessing myself for a while about those last two weeks even though i know realistically it probably would not have made a difference. This must the thinkers disease, I feel sometimes we think, overthink and rethink everything that happens.
@katie, fingers crossed for you today, and BTW it kinda feels like Alaska here in the northeast today.

petra · « **Reply #42 on:** January 08, 2015, 09:58:33 am »

Good on you Jazz!!

Cheers, Petra

Katie · « **Reply #43 on:** January 08, 2015, 08:35:20 pm »

Hi everyone.....

So here is my 4 week report!

End of November VL = 2.692,043 with normal ALT/AST
The virus fluctuated from over 2 million to over 16 million during the past 9 years and I am lucky to not have cirrhosis. This is my first treatment as the old horrible one was not worth it due to the small cure rate percentages, so I refused it.

4 week blood work: VL = 59

So for all of you newbies.....this is a miracle drug and welcome aboard! Don't Worry....Be Happy and we are around to reap the benefits. I feel so blessed and so grateful!

Katie

FYI: Alaska, especially the panhandle where I am, is having a very "warm" winter! It was unusually mild last year too. It is still in the 40's and 50's and we have only had 2 very short periods (about a week each) of freezing temps with a light dusting of snow. This somehow feels very wrong to me but I'm not complaining as it makes my life less complicated!

Mike · « **Reply #44 on:** January 08, 2015, 09:57:49 pm »

Hi Katie,

I think your Alaskan winter headed south this year. It was -4 here in northern Ohio this morning.

Also, congrats on the blood work! Sovaldi is a game changer!

Best wishes, Mike

Katie · « **Reply #45 on:** January 08, 2015, 10:02:41 pm »

Mike: I know, it is just crazy. The Polar Vortex missed us and so I guess qw are getting tropical currents on the coast. One day it was windy and the wind was like 50 degrees! It was like a spring day. I'll take it but as a fishery biologist I worry about the temperature of the water and the snow melt for the out migrating salmon fry in the early spring and returning spawners in the fall. No snow pack gives low creeks and rivers.

Thanks for the good wishes. I am just amped up right now and one happy lady!

Katie

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