Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: BillT on October 16, 2015, 09:50:12 am
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I start on the Viekira tomorrow for 12 weeks.I'm being told with my genotype it's a 100% cure and won't try to kill me like the Pegintron I was on 11 years ago.I'm taking it through the VA and was told they only add the Ribavirin if you have cirrhosis.They did a FibroScan on me and it was a 10,my viral load is 440k,my genotype is 1b.I never thought we'd see this in my lifetime and I'm ready to get this started.
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Just to lighten it up a bit.I told a lady friend some of the side effects were insomnia and making me irritable.She looked at me and asked how we were going to know if I was having side affects.I didn't know what to say.
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Welcome, Bill -- thanks for the chuckle. Amazing how low your numbers are 11 years past prior treatment. You're in great shape. Best wishes for an easy time on treatment.
Gnatty
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Thank you Gnat.I wish I didn't need to be here but I am.Like a lot of others got this when I was in the Army.I was diagnosed in 1980 when they were still calling it non-A non-B and found out when I went to donate blood.This will be nothing compared to the last treatment.I refuse to let this beat me,and I refuse to lose my sense of humor.
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Here is a great place to be. 12 weeks, no riba, 1b - you my friend are in the box seat.
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I got better seats since the interferon treatment Philadelphia.My VL at that time was 800+k.I'm very grateful to be where I am right now.I can live with 12 weeks of this and what I will consider minor side affects.I'm 5'8" and dropped to 126 lbs on that one and swore one of the last 3 shots was going to kill me.I was told it only worked on 30% that took it so this one is a blessing.Say hello to Upper Darby and West Chester for me. :)
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I live in country Australia. I can say hello to Tintinhull and Timbumburi if you like. :) Philadelphia Story is the name of my good horse.
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I did go through Philadelphia on a train in January though!
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Philadelphia Story is the name of my good horse.
I've always wondered about your handle, Philly.
Welcome BillT. Congratulations on starting treatment! It sounds like you're going to do fine.
Cheers!
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Thank you Else.I know this time the stars are with me.I'm very confident about this and so is my doctor.I've had the meds since Tuesday but because I need my apps on Fridays I was told not to start until tomorrow.I'm so ready for this.To Philadelphia al I can say it AUSSIE,AUSSIE,AUSSIE,OI,OI,OI.lol Keep your sense of humor people it makes the bad times better,and they will get better.
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Hi Bill,
Welcome to the forum.
You'rve ticked all the right boxes. Geno 1B no ribas, low damage. You'll SVR no problems. So you're 12 weeks? Yes I did ifn, a lot of us here have. I never got over it. Lost a few body organs and lots if health to it. It like drinking rat poison. You'll hardly know you're txing without the ribas. If you were re on ribas it would be a different tx altogether. Good luck. Cal :)
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Hi Cal,
I'm still mentally in that last treatment even though it was 11 years ago,and I'm still a bit goosed about this one because of that.I realize this is nothing like the INF but it's still there.I can't wait until tomorrow to get started.I can't believe after this many years my numbers are so good but I'm grateful for that.I'm also grateful that those of us with it have a chance to get rid of it.I wish everybody all the best in their treatments.It sounds very positive to me after reading the other posts.Thanks
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Hi Bill,
I hear ya. It's a shaky road psychologically if you've txed before, the thought of what happened before is always there, but you find a way to deal with it. Put it in a little box in your head and tell it to stay in it's box. Let it out when you SVR! That's what I try to do. I am not always successful, but the forum helps me a lot to stay positive. It's the program we have now and it deserves our full attention, you give it all you've got and I know you'll svr. But yes get started already, half the anxiety is waiting. We become very good at waiting don't we? Cal :)
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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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Thanks again for posting that Lucinda.Considering the small number of cases as opposed to the number of total treatments with success I think it's worth the chance to be rid of this.We'll just have to keep a close eye on things as we go.Most of the drugs on the market have higher instances of major problems and doctors prescribing this when it not recommended could be a large part of the problem.I for one will continue.Thank you again.
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After reading the notification I rang my treating hospital and spoke to one of the nurse specialists I dealt with. He said that he'd pass it further up the food chain.
His comments were that VPak was never recommended for Child-Pugh B or C and the insert said not recommended. In relation to any concern of mine, he said they monitored all clients very carefully with regular blood tests - true, Week 2, Week 4 and then monthly until EOT and for me because of raised bilirubin levels extra testing in Weeks 6 and 10. He said he'd expect to see things go downhill while on treatment and continue that way. As my last blood test 2 weeks post EOT had shown bili back to 1 point outside normal and ALT and AST in normal range (as they had since week 4) I should attempt not to panic.
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Yes, not panicking is the best advice. I think it best to know that this warning exists, and heed this, "Patients taking these medicines should contact their health care professional immediately if they develop fatigue, weakness, loss of appetite, nausea and vomiting, yellow eyes or skin, or light-colored stools, as these may be signs of liver injury."
Sounds unlikely to happen to most, especially those in the early stages of liver disease. Also sounds like most of the occurrences were in the first month. Also, medication interactions seemed to increase the risk.
If you are on these drugs, panic will make your treatment very uncomfortable. Just watch for these signs, and let your doc know ASAP rather than hope things will improve. You can talk to your doc or pharmacist about potential drug interactions. Here is a good tool: http://www.hep-druginteractions.org/ (http://www.hep-druginteractions.org/)
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Well today I feel like I just want to jump out of my skin.I'm tired,irritable,and stressed to hell.I'm just going to suck it up and go on(like there's anything else I can do).I hope this isn't a indication of what the next 11 weeks are going to be like.
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Bill,
Please remind me - are you taking ribavirin? If so, this may be what the next 11 weeks are like, but there is help for that. If not, then I'll leave it to those who only took Viekira Pak w/o rib to weigh in. Also, sometimes we just have jittery days - meds or no meds.
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Hi Lucinda.I'm only taking to Viekira thank God.I've been doing great so maybe it is just a bad day for me.I'm just completely exhausted right now so that probably has a lot to do with it also.I think someone mentioned that weeks 2 and 3 were the worst also.I guess part of the stress is also the unknown part of,is it working.I get the 2 weeks labs done on Wednesday so maybe that will calm me some.If it wasn't for this forum and all of you I'd be completely lost.Thank you.
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I'm excited.I'm on day 10 and will find out Friday the results for my 2 week labs.All those side effects that crushed me on day 7 are gone and I'm feeling great.I actually slept better the last 2 nights than I have in forever and I feel like I have more engery.I wish I could move time a little faster.
Whatever doesn't kill you,doesn't kill you.
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Bill,
You're nit are ribas either. Just try some deep breathing and there are loads if deep relaxations online you can lie down and do. It'll pass friend. Cal :)
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No I'm not on the ribas Cal (Thank God) and I've never known how to relax.That's just part of me.I did go on a 5 mile bike ride today and really felt the fatigue right after but I'm fine again now.Tomorrow I go get my labs done and will get the results on Friday,and tomorrow night I'm going to see Mark Knopfler as a treat to myself.I don't know what the turn around time is for them to do the labs but I may call triage on Thursday and see if they have the results.I'll post them as soon as I find out.Wish me luck.
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Oh Bill,
You're first 2 weeks bloods. Good luck and have a great time at Mark Knopfler you lucky guy! Cal :)
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Well I had my lab work done yesterday and will find out tomorrow.I'm really irritated because I found out they didn't do a VL on me and that is what this is all about so I'm going to request they do one when I see my doctor.I have a question for everyone.I noticed when I over extend myself physically from what I normally do the side effects seem to show up more or worsen.Has anyone else noticed this?
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Hi ?Bill,
Re the sxs. Yes! That's why I am resting today. TV and the couch. We can't do to much, we have to be gentle on ourselves, but you only learn from over doing it! Good luck with bloods. The LFTS will tell a lot. Bugger they didn't do the V/L. Cal :)
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Good morning Cal,
I noticed that the only time I have any side effects is when I exert myself.It's like they wait in the shadows for me.The last few days I've had things to do so I know I pushed the envelope but I'm learning what sets it off.One of the odd things is that a few hours later they die down and then I sleep better than I have for years and feel great.I go see the doc later today so I'll ask about having the VL done and let you know.You need to get some bon-bons to go with that TV and couch. :)
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I'm thrilled.I have to wait until week 4 for the VL but everything is pointing towards it being undetectable.I also discussed another Fibroscan at the 12 week post EOT.He told me that they've been wondering about that themselves so that's a go.My new numbers have all come down dramatically.Thank God.
AST 14 ALT 17
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Hi Bill,
No! No Bon bond, (we call them lollies in Oz!) I lost 3 Ks st the beginning of tx and then got a voracious appetite around week Six and put it back on, I am trying to avert a weight watchers crisis!
Yeah I'm the same with pushing it too hard. Which I have to say isn't a lot! I am going to have to do some serious exercise when I am well enough. Cal 8)
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Oh Bill,
What brilliant numbers, better than most really healthy people! Good on you. Cal :)
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Thank you Cali,
I'm so happy with that.My platelets dropped a bit but all else is great.My blood pressure really dropped but I was told to expect that and I'm waiting for them to call back and let me know what they want me to do.I feel wonderful so I'm not worried and will just continue onward.I've been eating a lot and I've still dropped 5 lbs.Look at it this way,now is not the time to diet,quit smoking,or exercise. :)
The Dragon has flatlined
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Look at your pretty numbers Bill! They are impressive. :)
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Bill I'm so happy your numbers look so good. And you're right about knowing your limits. I did a lot of resting the first week because I didn't know what to expect. Little by little I push myself further. This past Monday my daughter took me to lunch and to run some errands. I felt fine so when she mentioned clothes shopping I was all in. Later that night I literally fell on my bed and didn't do a thing. I slept so good that night. I find a few extra steps each day works best. The bad days (which luckily have been few) I do nothing at all. My doctor is doing my labs in 2 weeks. I have faith they'll show improvement. All the best on your VL. Keep killing this beast!
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Thank you Philadelphia and Jaf,
I'm floored.I expected a little change but nothing like that.I wish they had done a viral load but I couldn't be happier right now.I'm happy for all of us.Can I lead the Conga Line tonight? :)
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Bill,
I'm right behind you on that conga line. Kicking and screaming wahoo! Cal :)
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Hi Jaf,
I haven't met you yet, so welcome to the forums. You're looking really good too! Good luck with those bloods. What week are you on? Cal :)
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https://www.youtube.com/watch?v=cKg8IKfZ4cE ;D
8)
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Brilliant Else,
That's us exactly and in Australia too! Cal 8)
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Yeah, I was thinking of you and Philly when I saw Adelaide. ;)
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Else, THAT is what I'm talking about!!!! ;D ;D ;D Exactly what I had in mind 8) Just think if it were all Heppers, I bet we could make it all the way around the world at least once ;) ;) ;) Way cool.
Bill , You take the lead & let's see just how many international Happy Dancers we can get in line. I'll bring up the rear working the whip! 8) 8) 8) 8)
Cal and Marianne, We will carry You guys if we have to !!!
NO ONE LEFT BEHIND, EVERYBODY NOW, KICK UP YOUR FEET AND DANCE!
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Hey Cal,You've got rhythm girl.And of course we have to give Else credit for the music.Tommy,if they were all Heppers they would be much happier and having a better time. 8)
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You'd have to stop for rest breaks a lot! Then there's my RIBA cough attacks, other than that I'm in the conga line, starting in Adelaide! It's such fun! Cal :) ps thanks Bill, I've got an imitation of rhythm will that do.
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I'm so glad I found this forum and you people.It's hard for my family and friends to understand what this does to us and you all make it easier.I didn't get much sleep last night and my irritability is off the charts this morning.I hope none of the fish pee in the tank or they're in real trouble.What a way to start week 3.
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Cal, No problem ;). You got the rhythm and I got the blues, all rock n roll in between,LOL :D . Now all we have to do is get Marianne back on board ;) :-* ;D. BTW, ain't got nothing but time My Dear.
Bill, I can relate to all of Your points. after 12 weeks Tx. and 3 weeks EOT the sleep has finally come to Me.Irritability bordering on rage is an issue! Also, You find out who Your real friends are quickly. Unfortunately it also causes casualties on the home front Too! ::) :-[ :'(!
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Good morning Tommy,
I'm pretty much raging on right now.I have to say I've been blessed so far as side effects go.The first week was a bit dodgy but I know that was my system getting use to the meds.Day 7 I got hammered and there was really nothing but exhaustion the last week but only when I overexerted myself physically.My friends are true friends and my family doesn't have a choice in the matter so they tolerate me.I live alone except for 2 kittens so I don't have anyone to snap at unless I go looking for them.I'm usually irritable when I'm not on the meds so they're kind of use to it.Today I'm not even going to lock the doors or worry about answering the phone.They will do it just out of the instinct to survive. 8)
Dragons don't live forever
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Hey Bill, Let's just leave at Morning then! We'll save the Good for later!! Yea I had a pretty rough time during most of Tx. and continuing post EOT to some degree, But that is to be expected in My case. Boy do I have some stories!!!! The things I put Myself through are pretty crazy. BTW, not trying to diminish all the good these Meds. are doing. I have to keep reminding Myself and others that this is just My experience and not everyones!!!! There are many out there who have had little to no Sxs. while on Tx. or post Tx. Boy do I envy them.
Btw, the forums are a good place for venting & clearing Your Mind. Just be watchful not to accidentally or otherwise aim it at an individual. Keep it ambiguous and let it out. I personally struggle with that as I have no filter between My Brain and My mouth or fingers!!LMFAO.!
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I know what you mean.There's a huge disconnect between my brain and everything else right now and I know it.I think the thing with venting here is that we actually think about we're going to say instead of just going off,so we play nice.As I think about it the other reason we play nice here is that somebody is probably more irritable than we are.LOL
HEY YOU KIDS,GET OFF MY LAWN!!!
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BTW Happy Halloween everyone.A friend just invited me to a party.I wish I could figure out how to make a costume and go as my least favorite side effect,or a dead virus.I wonder what a cure looks like? :)
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Hey Cal. We haven't officially held a conversation but I have read a lot of your comments. I want to thank all of you for putting your experiences on this forum. It's already taught me so much. I'm mid way through week 3 and I thank god every day that so far there's been no major sides. My biggest concern is anemia. But I'll cross that bridge if and when I come to it. Can't wait to get my 4 week labs done! Again thanks to everyone for the info, moral support and laughs.
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Hi Jaf,
Yes lets have a chat now then! The only sxs for you sound like the riba ones, the anaemia leaves you quite unwell, but not everyone goes there. Having recently increased ribas and in aneamiasville now, I can say don't over do it. Listen to your body. Low HB knocks you around so look after yourself. You are doing well though to be nearly 4 weeks! Good on you! :) Cal :)
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Tommy,
I hope that virtual conga line is growing! You're in charge of music. It sucks that you had a rough time so far, but things will get better. Time passing and all that......
Just clear that virus and life will be worth a few post tx sxs. You'll sort them all eventually.
I saw on the news last night that Texas is flooding real bad. Hope you're ok where you are. I was reading on another thread about your cabin. It sounds just like on the movies. 8) Cal
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Bill,
I'm in permanent state of riba rage. Everyone tip toes around me. That or I'm bursting into tears. Cal :)
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Cal, CABIN????? I wish , Got an old slide in camper I took off & put on blocks a long time ago. It serves the purpose though. It gets Me out of the elements when needed. Spend most of the time outside anyway, unless it's raining or freezing. The wind blows big time in the winter!! It reminds Me of parts of Your country with different critters :D. It's God country for sure, but it's two steps from Hell in the summer time. I love it though. Plus, it belongs to Me & My little brother. It's almost 200 acres with little to no improvements. Pretty much the same as it has been for 100 plus Years. With the exception of being surrounded by much larger ranches that are being high fenced for commercial hunting. If it were up to Me, I would tear them all down >:( ::) :-X :-X.
THE STARS AT NIGHT SHINE BIG AND BRIGHT!!!DEEP IN THE HEART OF TEXAS!!!!!!!
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :
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Tommy,
You can't spoil my delusion! It's a log cabin on a lake on 200 acres. No hunting allowed. Beautiful country, no snakes or creepies. Crisp clean air and hammocks! Yes I've got it all stored in my tiny little mind.
Sounds like a Heppers Ranch to me! Cal hehe ;D (You're very lucky)
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Good morning all,
Maybe it's me but because I haven't seen anyone post about it.Has anyone had any trouble with their vision since taking the meds?I noticed since I've started that sometimes I can't focus.It's not bad just a bit annoying so I'm curious if anyone else has had it happen.Thanks.
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Cal thanks for the info. Even though I know every person's experience is different, in my opinion, there's nothing like hearing it from someone who's walked that road. I'm thrilled with how it's going 4 days into week 3. Very optimistic but I'm ready to fight through anything that may come. I realize now that for the past year or so I was experiencing symptoms of the virus (shaking, mood swings, brain fog, etc) so I already learned to cope with a lot of it. Since tx I find myself wanting to go off on people for the littlest thing. Growing up I had a temper but learned how to control it as an adult. It would take something major to set me off, where now I find myself wanting to go off on someone for holding up a line. I have to take a minute to breathe and turn away. I was joking with my daughter yesterday and said if I do lose it I can at least blame it on the meds. Safest thing to do is stay home when I have those days. It does mess with your head at times :o
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Bill I've noticed my vision getting worse even before treatment. I just figured it was age related. Since tx it's gotten worse. I've been meaning to make an eye doctor appointment but now I'm wondering if they prescribe glasses now what will happen if some of it clears EOT? Insurance won't pay for new glasses. Another good question for my doctor. Thanks
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I completely understand the temper thing Jaf.The vision thing was just something I noticed.I wear reading glasses but it seems to be worse right now for my distance.Interesting.
https://www.youtube.com/watch?v=u4ZgVRJ-H8U
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;D ;D ;D Good one, Bill. I see that Moe is dealing well with his Riba side-effects. ;D
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Hi Bill,
Yes my vision was blurred on and off in the early part if tx but has returned to normal. It was very frustrating, I had to use a magnifying glass to read labels and things. Cal 8)
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Hi Jaf,
Yes that's RIBA rage for you! Best stay away from people. I hurt my hand punching the kitchen bench. Just keep sharp objects hidden! Cal :-\
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Good one bill,
Moe on ribas ! He he. Cal :)
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I wonder how many have gotten the vision thing and never connected it to the meds,or even if it is connected.I was trying to watch a movie and it was like I was wearing 3D glasses.
Get away from me.Don't make me go Moe on you.
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Interesting about the vision. I had a cataract repaired in my left eye about 1 1/2 year ago..now my right eye has gotten really bad. It does seem worse since I started treatment 6 weeks in. Have appointment with eye doctor tomorrow, will see what he says. Think I can blame a cataract on HepC? Other eye doctor told me it was too much time in the sun with no sunglasses. Who knows. Will hopefully find out tomorrow.
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Cal - If I get myself in trouble I'll say "sorry officer, it's riba rage". Think they'll even know what I'm talking about? I'm glad you said your eye sight got a little better. Hey, I'm going to be 57 this month so a lot of things like brain fog and poor vision come with getting older, but this seemed to come on faster than normal age progression.
Else - wow 3 denials. I'm so happy you didn't give up and finally got approved. What is wrong in this world when they have meds to help people but make them go through so much BS before treating them. I don't know anyone who would go through this treatment on a whim. It really makes me wonder how many people never get the chance to be treated. It makes me sad but I feel so blessed at the same time.
Bill - I can always count on you for a laugh! Trust me, there are days when I want to do just like Moe and go slap happy on people. I live with my daughter and she's the one who keeps me sane because she's always laughing. I warned both my kids before starting treatment that I might lose my shit for no reason at times. They looked at me like "seriously mom?" My son said "I've been watching you do that for 30 years!" They love to laugh WITH me and AT me. My son is getting married in July so I definitely have to kill this and be SVR12 by mid April.
I overdid it today. I was feeling fine the past 2 days so I tackled a lot of what I put off. Glad it's almost done. But for now I'm just going to chill and catch up on shows.
Peaceful night to all
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Cindy,
Let us know what the eye doctor says.I'm going to talk to mine in 2 weeks and see what they say to.
Else,Cali,and Jaf,
There's instructional videos everywhere,you just need to know where to look for them. ;)
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I think my vision was a little blurrier than normal. And I think it's better now.
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Has anyone experienced or heard of irritation of the mouth while on Ribas or Sovaldi? I have no sores anywhere in my mouth but the past two mornings, the slightest bit of mouth wash made my inner cheeks sting so much. I had to rinse with water to ease it. I did read that some people get a metallic taste in their mouth or food can begin to taste different. That hasn't been a problem so far but I'm wondering if that's where I'm heading. I'm finally eating well again and I'm hoping just switching to a milder mouth wash will fix it. Any ideas?
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JAF, no stinging inner cheeks (except when I accidentally included some cheek when I chomped down on a bite of sandwich), but I did experience the metallic taste -- just during days 50-53 of Harvoni (which includes Sovaldi) Tx. As others mentioned, the metallic taste was only near the throat. That meant I could still enjoy the taste of food where it entered my mouth, before it acquired the metallic taste. After day 53, no more metallic taste!
I don't know what mouth wash you use, but when I tried the heavy-duty Listerine (the one with strong plaque-prevention claims), my lips and tongue would start to go numb 28 seconds into the 30 seconds I was supposed to have the stuff in my mouth. That didn't happen with a Crest mouth wash or with Listerine Zero.
Speaking of plaque, the last 4-5 years before Harvoni Tx, my mouth was producing copious amounts of quickly-hardening plaque, despite conscientious dental hygiene. Post-Tx, I seem to be making a lot less plaque, and it seems easier to remove. I'll know for sure in mid-January when my dentist does my next cleaning.
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. . . It like drinking rat poison. . . .
Cal, I just read that old post of yours with your description of interferon. Ironically, I've been ingesting rat poison daily for nearly 16 years! Warfarin (brand name Coumadin) was invented to poison rats by preventing their blood from clotting, so that they would bleed to death. It was only later that they realized those of us whose blood has the bad habit of clotting much too easily could benefit from a low dose of rat poison. Maybe I should change my moniker from Gnatty to Ratty.
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Has anyone experienced or heard of irritation of the mouth while on Ribas or Sovaldi? I have no sores anywhere in my mouth but the past two mornings, the slightest bit of mouth wash made my inner cheeks sting so much. I had to rinse with water to ease it. I did read that some people get a metallic taste in their mouth or food can begin to taste different. That hasn't been a problem so far but I'm wondering if that's where I'm heading. I'm finally eating well again and I'm hoping just switching to a milder mouth wash will fix it. Any ideas?
You might want to google oral lichen planus. It seems to be associated with ribavirin. Can involve mouth sores or soreness or burning or I think metallic taste. I experienced a mild case of something that fit that bill while on tx (harvoni+riba). I had a burning tip of tongue and metallic taste. Best remedy is to double down on oral hygiene with frequent brushing/flossing. And rinse your mouth with warm salt water. Swoosh it in your mouth for as long as you can. Oral lichen planus requires an acid environment.
good luck!
kim
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I was diagnosed with oral lichen planus by an oral surgeon before I ever went to see my hepatologist. Well-documented link between this condition and HCV infection. In a very general way, it's the result of a stressed immune system and is expected to resolve post-treatment.
In fact, it was one of the things that my independent medical review doctor singled out as being a compelling reason for overturning the "not medically necessary" decision by my insurance.
Interesting you should mention "tip of tongue" soreness during treatment. Me too. Definitely different than the lichen planus lesions. Hyper-taste sensitivity as well. For example, a stick of bland string cheese was inexplicably almost too salty to eat. Weird.
Good idea on the strict adherence to excellent oral hygiene. Just make sure your warm saltwater rinse isn't too strong (1/2 tsp per cup of warm water) or than can cause irritation in and of itself.
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Interesting you should mention "tip of tongue" soreness during treatment. Me too. Definitely different than the lichen planus lesions. Hyper-taste sensitivity as well. For example, a stick of bland string cheese was inexplicably almost too salty to eat. Weird.
Me too, Else! I became hyper-sensitive to sweet and salty on tx. Could not eat apples or bananas or most other fruit while on tx because they tasted grotesquely sweet. Could not eat cheese because it tasted too salty. Fruit and cheese are two of my staple foods, so that contributed to my malnutrition & weight loss during tx.
Yes, oral lichen planus does seem to be associated with HCV itself. I had never experienced it before, tho. But like you say, it's the result of a stressed immune system. So probably the added stress of the drugs (I think the ribavirin in particular) tipped me over the brink while on tx.
best,
kim
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Gnatty thanks for the reply. I thought it might be the Listerine because when I changed from Crest cinnamon flavor I did notice it was stronger. I haven't truest Listerine Zero. The burning only happened the last 2 days and daughter brought up a good point too. I've mentioned before I just got my appetite back around 3 days into treatment. It could be the fact that I went from eating fruits, salads, soups and everything light to wolfing down heavier foods like bagels, hard rolls, pizza, etc. I may have irritated my mouth because I'm back to eating rougher foods.
Kim and Else - I have noticed more stubborn plaque when flossing even pre-tx. Never even considered it might be virus or treatment related. The other day I was trying to remove it and I made my gums bleed. Luckily I have to go for a cleaning soon too. Half my bottom teeth are fake and I want to keep as many of my real ones healthy and strong. I have to look up this oral health side effect. Might have to do the salt and warm water rinses throughout the day, but I do love the fresh feeling of mouthwash before I leave the house.
And yes although sweets don't bother me I have noticed salty things that I once loved have a less appealing taste now. Food changes are nothing compared to dealing with the more serious side effects.
Thanks for the feedback.
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Thank you again everyone. Just googled lichen planus. It is also one of the skin rashes we are prone to. Back in the late 80s/ early 90s I developed a shiny, scaly rash on both ankles and part of my shin. The dermatologist thought it was psoriasis. It flared up a few times then disappeared. I thought the cream the doctor gave me worked. Till this day I still have a small patch on my outer left ankle but it never turned red or itched since. But it is exactly as described in the article.
Just goes to show how many symptoms we might have had that we never related to the virus. And back then, most doctors weren't aware either.
A breakfast of protein, whole or multi grains and probiotics is suggested. I don't eat eggs, yogurt or oatmeal which were all suggested so it looks like I'll be eating a lot of Cheerios with blueberries, strawberries and bananas. I'm also going to buy some protein powder and make smoothies in the morning.
This forum is a wealth of information!! Thanks again
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Hi Jaf,
I have lichen planus too! This virus has a lot to up answer for? Smoothies are a great idea, especially if you do lose your appetite.
I think you'll find your brain fog gets better too. I don think it's age related. The Doctors who know nothing about HCV like to attribute our plethora of symptoms to getting older! :'( cal
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Hey Jaf,
HCV causes systemic damage, that is almost without question. Almost. The problem is sussing out correlation from causation. Insurance companies want to see direct causation because it greatly reduces what they are on the hook for.
Even some specialists (my hepatologist for one) are reluctant to go on record that extrahepatic manifestation are relevant. One on hand, I understand. They want to adhere to sound science and causation and correlation are not the same thing. Their professional credibility is on the line.
On the other hand, I cannot wait for the day when HCV is no longer considered solely a "liver disease". It does a disservice to too many people.
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The Doctors who know nothing about HCV like to attribute our plethora of symptoms to getting older! :'( cal
Oy!!! Sick of that. It's such a cop out when a doc can't bring themselves to say "I don't know."
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Or maybe it's human nature. A lot of us attributed our fatigue to getting older. History shows that humans nearly always try to explain things in terms of what they already understand.
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Hi Gnatty,
My brother died of one of the co morbidities. Now I have the same thing he died from. At the Q and A I spoke very vehemently about HCV being an all body illness and people are dying and disabled by the co morbidities before their livers can catch up. That is you can be F0 and be unable to function.
There are lots of publications about the co morbidities. I never once put any of my illnesses down to aging. The Doctors did, I was 40 when I got my first auto immune problem.
I am lucky to have trained my Medicos giving them publications on it. I worked in Medical Research so I had access to lots of information. I am a natural born researcher like a dog with a bone when it comes to this subject. So sorry if I come of a bit riba ragey!
But yes people do have the need to explain and justify and if your Doctors aren't picking up on your suffering then of course you'll find a away to validate it.
It's a crying shame. Though your Mayo Clinic is pretty hot shot with the research. Cal :)
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Cal, I agree that we need to educate doctors whenever necessary, and you and I have to do that to avoid catastrophe. (I'm very sorry you lost your brother and find yourself in the same boat.) But I sympathize with the reality that doctors seeing patients all day and putting in overtime for emergencies can't keep up with the huge amount of new medical research results on every possible ailment they may see in their practice. We humans (doctors included) often don't realize that we don't know something -- we assume we know based on past experience unless our hypothesis becomes untenable. My reaction was to Else's post (calling it a cop out), not yours.
I definitely have my own bias. If a doctor has a huge ego, then I tend to regard a misdiagnosis as malfeasance. But if the doctor is a genuinely caring human being, then I tend to regard a misdiagnosis as a typical human failing.
No, you didn't come across as riba ragey. Thanks for your post. -Gnatty
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Gnatty, my reaction came from the all too recent experience (July) of having a neurologist not be willing to look at or even take the article I had brought with me regarding peripheral neuropathy and HCV. "I'm not familiar with that journal". It was the same one Marianne has recently posted links to.
Instead I was given a nerve conductivity test which confirmed my PN. His conclusion? Age. I am 53. Three appointments: consultation, test and follow-up totaling over $1500.00. To what end?
And the reason I went to him was that my hepatologist deferred diagnosis of a CNS disorder to a neurologist. He in turn deferred the diagnosis of HCV related symptoms to my hepatologist. :o
Hence my touchiness about doctors offhandedly assigning things to age. This summer was insane. No, I don't expect doctors to be super-human or omniscient. But I do expect them to try. Otherwise what's the point in going to a specialist? I can shrug things off to old age myself.
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Cal, I agree that we need to educate doctors whenever necessary, and you and I have to do that to avoid catastrophe. (I'm very sorry you lost your brother and find yourself in the same boat.) But I sympathize with the reality that doctors seeing patients all day and putting in overtime for emergencies can't keep up with the huge amount of new medical research results on every possible ailment they may see in their practice. We humans (doctors included) often don't realize that we don't know something -- we assume we know based on past experience unless our hypothesis becomes untenable. My reaction was to Else's post (calling it a cop out), not yours.
I definitely have my own bias. If a doctor has a huge ego, then I tend to regard a misdiagnosis as malfeasance. But if the doctor is a genuinely caring human being, then I tend to regard a misdiagnosis as a typical human failing.
No, you didn't come across as riba ragey. Thanks for your post. -Gnatty
Gnatty,
I am riba ragery. I just scared my husband and two sons. They are well aware of riba rage and understand but I hate being a Jackal and Hyde person. It makes me feel out of control. I hate hurting those I love.
I actually don't expect GP's to be in the know but I expect the Professors and Specialists I see to know EVERYTHING NEW. That's what their paid for. In any Profession there is continuing ongoing professional development. I have to in my profession. My patients and peers expect it.
The humble GP I agree has so little time and are so overworked, they have to know a little about a lot and refer to specialists when out of their knowledge sphere. Cal :)
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Gnatty,
Thank you for your kind words about my dearest brother. Cal :)
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I had a great discussion with my doctor this past Friday.The reason being was the information all of us pass around on this forum.I can't really fault the doctors(of course some think they're God but that's besides the point).The HCV manifests itself in as many different ways as we have individual reactions to these meds.The thing every one of us have over our doctors is that we're the one's with the disease.Let's face it,over and over again as we talk here we realize that things we never thought of as being virus related seem to be.Many times we thought that it was something only we had or were going through until we realize a lot of us are having the same problems.We're just scratching the surface of understanding all of this and the meds and we have a long way to go yet.
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Cali,
You strike me as a more Jack the Ripper type. :)
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Hi Else,
I had the Nerve Conductivity test for PN too. My Neuro said you have to tx for your HCV, because this is HCV related. He also said that my Organic Brain Damage may be reversible if I txed. He wrote to my Gastro. I was lucky I didn't have to wave my HCV flag at all with him.
He knew me though from when I had a slight stroke (TIA) which he also believed was HCV related. There are publications on this as well.
Sorry you had a hard time. That Publication from Journal of Immunology was eaten up by my Doctors here. My GP scanned it onto my file. That dude sounds like a right royal pratt. Cal :)
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Bill,
You've got me pegged. I told my family I would kill them all, but I'm too sick to! That's Jack the Riba Ripper! Snatched from the jaws of death once again because I'm too tired! hehe. Cal :)
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I'm having one of those nights that sleep isn't in the cards.I can't really call it insomnia because I have so much energy and I'm not tired.
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Bill,
A bit over revved perhaps? I get like that too. Sleep is impossible. Have you got anything to take? Cal :)
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I do Cal.I just hate taking any more drugs than I have to.I'm retired so it really doesn't matter when I sleep or wake,or eat.Being up for my meds is the only thing that matters.I wonder if any of my lady friends are up? :)
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Bill,
If you are thinking of lady friends then you are doing really well my friend! Hehe Cal :)
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Cali,
I'd rather deal with you and the Riba rage than waking one of them at 3 am.lol
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Else, thank you for your explanation. Yes, if I had had your experience, I would have been disinclined to cut the doc any slack.
Cal, alas, I have been a professor (fortunately in music, so it was hard to hurt anyone physically except perhaps in the eardrums if I performed badly). The everyday needs of hundreds of students would leave me totally wiped out by week's end. Often the only chance I had to learn anything new in my field was when we faculty were interviewing candidates for an opening.
BillT, your "The thing every one of us have over our doctors is that we're the one's with the disease" is well put. I went to enough duds over the years that now unless I'm in an emergency situation I "fire" any doctor who doesn't understand the concept of doctor-patient partnership: his/her medical knowledge coupled with my knowledge of this one unique body.
Thanks, everybody. Great discussion. -Gnatty
P.S. This is the golden hour: Aussies awake, North American Westerners not yet asleep, BillT with insomnia, and me having gotten up to pee in the middle of the night.
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Gnatty and Cali,
I think because we're the one's on the inside looking out we have more perspective on what's going on.They can read all they want but unless they've been there it's hard for them to truly understand our situation.Lucinda is a great example of someone who can relate to both sides of the coin.I do agree with you in that I won't be dictated to by a doctor and it has to be a 2 way working relationship.If not it doesn't work.I was thinking about the vision problem today and it got me wondering if maybe it could be the meds working on the virus that are in the eyes.Any thoughts?
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Hmm, interesting hypothesis, Bill. Hep C bugs in my eyes -- just like real gnats, except on the inside. I dunno why I had always pictured those viral varmints circulating only from the neck down.
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Gnatty,
The virus is going to be anywhere there's blood and the meds will kill it anywhere they find it.I'm also curious about something else and I'd like to hear for those that went through it.I was on the interferon and riba in 2004 and I don't remember the riba rage at all.I'm beginning to think it's these new drugs and the riba combination causing it and the interactions between them.Any thought's?
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Bill, i was saying you made me realize how silly and incomplete my picture had been. Although I don't have personal experience pre-Harvoni, I did read one of Lucinda Porter's books written to help Hep C'ers through the old treatments -- even back then, riba caused a lot of people to experience extreme emotions.
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Hi Gnatty,
I remember a lot of terrible things about that treatment but for the life of me I can't remember that.The VA actually set us up with mental health before we started the treatments because they knew what was about to happen to us.How odd.
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Aren't WE your lady friends Bill? Lol
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Yes you are Philadelphia but I would sooner be staked naked in the middle of a room and covered in catnip in a room full of kittens than wake a woman on riba's at 3 am. ;)
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You are clearly wise beyond your years.
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Bill i swore I wouldn't treat until they came out with a treatment that did not include interferon or ribas. I whine over a head cold and there was no way I was dealing with those toxic drugs. Luckily when I finally received health insurance a friend recommended my primary doctor. He's the one who informed me that my symptoms were HCV related. He gave me all the info on the new drugs and referred me to my gastro doctor. I loved this guy the minute I met him and he's the one who finally convinced me to treat. He had me approved in 2 weeks. I can't believe tomorrow is day 21. I just hope the next 9 weeks go as well as the first 3. Everyone who braved the old treatments - I applaud you!!
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So many paths to choose from on this thread!
Welcome to Club V BillT.
Your liver enzymes are already remarkably low.
ALT&AST are the canaries in the coal mine for liver health.
Hepa (liver) titis (irritation) shows in the liver enzymes first and your liver is chill and at peace which means you likely have no more virus. Woot woot!!
Gnatty now that you mention it I too always pictured the virus critters from the neck down - weird. They could have been anywhere and maybe that was just a bit to creepy to contemplate. Does not matter though because the exterminator is in the building and won't leave until they do.
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. . . I too always pictured the virus critters from the neck down - weird. They could have been anywhere and maybe that was just a bit to creepy to contemplate.
Yep, I'm guilty as charged.
. . . Does not matter though because the exterminator is in the building and won't leave until they do.
Well put.
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Hi Philadelphia,
I'm only wise depending on who you ask and when. :)
Hi Jaf,
I'm right behind you in day 18 so we'll finish up together.You and I seem to be getting through this in a very easy way.I'm hoping our luck holds out to.I'm also glad you joined the cure train. :)
Hi Sapphire,
Thanks.I couldn't be happier with those LFT's.Those were taken on day 12 for what that's worth.My doctor told me point blank he was going to cure me without killing me.I had my doubts but I'm a believer now. 8)
What set me to thinking about the eye thing was a article about a doctor that contracted Ebola.He was cured but months later they found the virus in his eyes.I wonder if it just takes the drugs a while to saturate the places like eyes and the brain where there is no heavy blood flow.There's still a lot to be learned here so I have no idea how this is working.
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Wow, I go to bed and look what I miss out on!
I hoe you got to sleep Bill and are still chasing ZZZs now .
Yeah the virus hides everywhere, it's sneaky,which is why they have to saturate us. A V/L of 0 can still harbour a viral loaded cell somewhere, the brain up and nervous tissue are said to be good hidey holes for it.
Gnatty,
What instruments do you play? My late brother was a classical guitarist. My sons and I however , despite a piano, drum kit, guitars and even a glockenspiel remain gathering dust. Not a musical bone in our bodies I'm sorry to say. :-[
I don't know why the ribas are so prominent this tx. Maybe because we blamed everything on the ifn? But I don't remember the rage either, but it's like child birth, there's lots I don trembler about it, come to think of it there's lots I don't remember about everything. ::)
Good morning from Australia. Cal :D
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OK that woke me up now!
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Hi Cal,
I did get a nice nap today.Maybe I crashed and burned would be a better way to say it.As long as these treatments destroy the dragon they can hide where they want.The great thing is that these are just the beginning and the meds will get better for here.
Hi Beto,
Go back to sleep.I wish I could.
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Interesting about the vision. I had a cataract repaired in my left eye about 1 1/2 year ago..now my right eye has gotten really bad. It does seem worse since I started treatment 6 weeks in. Have appointment with eye doctor tomorrow, will see what he says. Think I can blame a cataract on HepC? Other eye doctor told me it was too much time in the sun with no sunglasses. Who knows. Will hopefully find out tomorrow.
Update....cataract surgery scheduled in a couple of weeks. Called this morning to Briova to see if there was any reason not to have the surgery or things that I needed to be cautious about. They did not seem to think there was anything of concern. Naturally the eye surgeon has no clue or history with this medication, pharmacy seemed to think it would be OK to go ahead. Pretty sure we are the ones making the history on these meds.
I have an appointment with my GI doctor Monday, will ask him as well although, I do not think he has much knowledge or information on the drug or interactions. Wonder if the virus has added to the vision issues?
Other than that, all is good with the meds. I am into my 6th week, can not believe I am already almost half way ;D
Thanks for all of the great information on this site, has been very helpful and entertaining as well!!!!
Cindy
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Hi Cindy,
I wish you all the best and congratulations on your 6week mark.I have a hernia I need to get fixed but the surgeon refused to do it because of my LFT's.At EOT12 I'm just going to smile and tell him to prep the operating room. 8)
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Good luck Cindy,
My Dad had both eyes done last year and he's a new man.
Bill,
I'm having my thyroid removed asap post x. My Gastro said 3-4 months ish post tx. Cal :)
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Getting older requiring a whole lot more maintenance, doesn't it!
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-sure does. My ancient car goes into the shop less often than I do.
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I'm still trying to figure out how you people make side effects,aches and pains,and getting old fun. :)
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Bill, consider the alternatives. We may as well get our fun however we can.
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think of all that wisdom we enjoy...when we remember :)
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Wonder if the virus has added to the vision issues?
It could be. HCV infection affects the vascular system. I'm glad you're having the procedure! :)
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Oh Bill,
We have to laugh at ourselves before everyone else starts laughing at us. Though my sons are laughing at my antics already. My youngest said when I told him I only had one more week of RIBA s. " no more RIBA rage then Mum" , I shouted at him of course! Cal ::)
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I just took my last pill to close out week 3 and if I did the math right tomorrow I start week 4.I can't believe I'm this far along already.The kids are probably more thrilled about the ribas being done than you are Cal. :)
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Bill,
I think you're right about the kids, they point out to me that I am shouting at them at the most inappropriate times :-X though it's been a slog fir sure. I think it's a bitter sweet drug. Love and hate. Glad it's nearly over. I hope it's the last time I ever have to have it. Cal :'(
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I didn't know there was a inappropriate time to shout a kids Cal. :)
Shhhh...Be vewy vewy quiet.I'm hunting Dwagons.
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Bill,
Excellent point., I'll just keep shouting then. ;Dcal
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Somebody told me today that I was a mean,nasty,irritable SOB before I started this treatment.Then they told me in the 4 weeks I've been on it I've achieved perfection.Who knew it would be that easy? 8)
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Bill, Welcome to the designated M.F.er's society ;D Thought I was one of the few remaining politically incorrect S.O.B.'s left.
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Thank you for the welcome Tommy.I'll try my best not to let the society down. :)
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:-*
You all are my angels...
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There's a lot of wonderful people here and we're all in this together Fight.As I said if you have any questions or concerns just ask.Oh,and try to stay out of the way of the conga line when it gets going. :)
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Are you kidding me BillyT? I am strapped with my ret dancing heels and firing red electrical guitar!!!
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Thank you
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You're going to fit right in here Fight.lol
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Viekarians are just such better Conga line dancers than Harvonians...hehe.......kidding 8)
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HEY HEY HEY!!!!Remember who started the conga line My Dear Cal :) ;) :D ;D 8) 8) 8) 8)
How are You doing Cal? Feeling any better? Still feeling like crap here. Muddling through. The head aches & joint pain don't seem as intense, just all the time now!
Welcome Bill & Fight!! Been out of commission for a little bit. Just getting caught up. Hope You guys are doing O.K. and having a good Tx. ! Good Luck & smooth sailing.
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Hey Tommy,
I'm Took my last ribas last night. Now to wait for them to start leaving my body. :-\
I had a V/L this morning and get results Wednesday. Then will know if to take the fourth month or if I've relapsed then stop all together. Can't wait till Wednesday it's torture.
Sorry you're doing it hard. Get better because you're conga line is growing exponentially!!!
I am feeling like shite thanks. I have open ribas sores all over me now, very sexy! Very tired and brain fogged, hoping it's riba related not the other! But I'm ok. Going away for the weekend soon so will be off air. Need a break from the family, and they need a break from me. 8) Cal
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I'm glad you're finally got to drop the riba Cal.You're going to be fine and it's going to be easier now.Is there any way you can call and get the results before Wednesday?It might be worth a try just for the peace of mind.The worst that can happen is they say no.I get my results today and I'm excited and just a wee bit nervous.I'll post my results this evening.I'd say wish me luck luck but I'm a Viekirian and we don't believe in luck...and we know for a fact we're better conga line dancers than those darn Harvonians.I'm betting that Tommy and the rest have spent weeks watching videos of us trying to figure out how we do it. 8)
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Hey Cal, Just wondering if You have access to any Aloe Vera? The wife has a big plant growing in the front garden. Always breaking off a piece for cuts ,burns, sores & what not. Works very good. It's natural and grows right back!! Anyone that wants some You can pull a chunk with roots & it grows jus about anywhere.
Bill, good one! I got two left feet anyway. BTW, doesn't Viekira cause delusion.
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:D :D :D :D
Ha ha so I am a Harvonist wahoeoeoeoe.
Bad temper tonight, mood swings bè, but I started laughing reading here.
Learned a lot again, like the metallic taste in the mouth and the strange taste of food (day 11 today).
BillT I hope you get good results!!!!!!!!!!!!!!!
Oh and I like to join the Conga Line ( when its allowed as Harvonist 8)
Greetz from Holland
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Lost in translation, Maddy! ;) A Harvonist is one who plays the Harvoni. But how's is that possible, you say? Easy! Take one empty Harvoni bottle and fill it half way with pebbles, pennies, buttons - use your imagination. Give it a shake et voila! A variation on a gourd rattle. ;D
(hey, some lunatic was suggesting they be used as Christmas tree ornaments. ::) This is much more festive!)
p.s. gives new meaning to the phrase "shake your moneymaker!" :o
p.p.s. Madelief you're a Harvonian!
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Well no joy on my VL yet but my AST was 14 and my ALT was 14 also.The only thing that was a bit out of whack was my white blood cells.She told me it looked like I was trying to fight off a infection.I didn't say a word. :)
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Such discretion, Bill! Your ALT and AST are terrific -- I'm jealous.
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Thanks Gnatty,not many people are jealous of me. ::) I'll post my VL as soon as I get it.One other thing before I go for the night.I asked the pharmacist at the VA the grapefruit question.She said there's no problem with the Harvoni but there is with Viekira.Evidently there's one chemical GF reacts with and raises the med level in the blood.I believe someone had said that when it was asked but I can't remember.I apologize for posting that here but I'm too tired to look for the original post.
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Oh and I forgot to post the best part of my discussion with her yesterday about my labs.She told me my white cell count was up,her words,like my body was fighting a infection.Tap,tap,tap...hello is anybody in there? :o
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Lost in translation, Maddy! ;) A Harvonist is one who plays the Harvoni. But how's is that possible, you say? Easy! Take one empty Harvoni bottle and fill it half way with pebbles, pennies, buttons - use your imagination. Give it a shake et voila! A variation on a gourd rattle. ;D
(hey, some lunatic was suggesting they be used as Christmas tree ornaments. ::) This is much more festive!)
p.s. gives new meaning to the phrase "shake your moneymaker!" :o
p.p.s. Madelief you're a Harvonian!
Else- I have 3 'havonicas' you are correct, whip out them badboys for the happy dance...am I right? teehee :D
Bill- I am with Gnatty, I have ast/alt envy
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Thanks for your explanation Else :)
I become a Harvonist when my first bottle is empty haha.
Madelief, Harvonian :)
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Hi all, my doctors put me on Having & Ribavarin for 12 weeks, I'm on my 10th week and I'm having really bad side effects from the Ribavarin, I have stage F3 frobrosis, why would my doctor add Ribavarin with the Having, every thing I read says Harvoni by itself should do the trick, I think I'm going to stop the Ribavarin, I would appreciate any feed back on this
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Hi all, I should have started with my name is Mike and I'm on my 10th week of Harvoni with Ribavarin , but I'm having bad side effects from the Ribavarin my feet swelled up and are all blistered and did colored and I have this anxiety that is so bad I cannot even hardly describe my feelings, why would my doctor add Ribavarin to the Harvoni, I think I should stop the Ribavarin , any feed back would be appreciated.
Thank you
Mike
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MJ, have you been treated for Hep C before and what is your genotype?
No doctors here, but lots of people who've collected lots of information.
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Hi all this is Mike again, I have Hep C 1a and I did try interferon for three days a long time ago, but it was onl for 3 days and it made me to sick so I stopped it, but every thing I have read states that Ribavarin is not needed with Harvoni, I would appreciate any feed back
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I've read the same, MJ. Hope more people will chime in.
And Monday morning I would talk to your doctor asap as to his reason for ribavirin.
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Hi all this is Mike again, I have Hep C 1a and I did try interferon for three days a long time ago, but it was only for 3 days and it made me to sick so I stopped it, but every thing I have read states that Ribavarin is not needed with Harvoni, I would appreciate any feed back
Hi, Mike --
I finally found the forum thread where someone gave his doctor's explanation for why Ribavirin was added to Harvoni. See Reply #3 here: http://forums.hepmag.com/index.php?topic=3169.0
Also, one of our forum moderators, Lynn K., got cured on the Harvoni + Ribavirin combination. I hope she'll see this thread and chime in.
The ultimate answer for you, of course, comes from your doctor -- why he or she feels it is necessary in your case.
Gnatty
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Hi,
If you have to take ribas like had too, then you can help with some of the sxs. I keep my feet higher than my head for a few hours to deal with swollen issues. I got valium for the anxiety. But check with your Specialist and tell them about the sxs. It's an endurance test. Keep posting and we can reassure you that riba sxs are pretty universal. You can do this. Cal :)
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Oh my God...UNDETECTED!!! I've never been so relieved in all of my life!!!
Come on Cali girl,make my day,and make it 2 in a row!!!
“So comes snow after fire, and even dragons have their endings."
― J.R.R. Tolkien, The Hobbit
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FANTASTIC BILL! CONGRATS! :D :D :D
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Thank you Kim.I know it's not over yet but I needed to hear that.
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Bill, I hope you won't get tired of hearing that, because I'm thrilled for you, too. Great quote!
Gnatty
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ditto great quote Bill...
Wonderful news. We all know that feeling of relief after much anticipation. During "result week" I never know if its best to go on line or wait for the docs office. I have trained them well at the office to blurt out "undetected!!!" at the get go. Sometimes I let it go to messages...torture. Yes I am a total results wussy. hehe
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YES!!! ;D Stupendous! 8) ;D 8)
And I think, with that quote, you've discovered what should be the official motto of the Hep C forums.
I for one will be adding it to my signature line when I get my EOT 12 results! :)
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Bill,
You did it! I am stoked for you. I will try to make it a second one today. I will know in about 4 more hours! Quiver. Cal :)
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I said it in the post treatment results thread, but I'll say it again because it's worth hearing again - congratulations!
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Thank you Beto,Else,and Cal,
I knew it was going to happen but just hearing it makes it real.
Beto,
I'm able to access my records through the Veterans Admin. but they didn't post yet so I called.I had to know.:) The nurse I spoke with said she wasn't suppose to give it to me but that "You should talk to your doctor about the undetected results.".lol
Else,
I've been waiting to use that quote.We should use that as the board motto.I think I'm going to have a shirt made with that on the front and SVR12 and the date on the back. 8)
Cali,
I know your's is going to come back as good as mine.That's the only thing that could make this day better. :) I'll be checking back so post as soon as you find out...like we'd be able to stop you. ;)
You keep saying it Philadelphia.You say it so well and with so much meaning to it. 8)
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BillT,
Great news, CONGRATULATIONS!!!!
Hiep hiep Hoeraaaaaa!!!!
What a good quote....
Madelief.
And now waiting for the good news from Cal :) I hope times goes quick these hours.
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Thank you Madelief,
I feel bad because I know someone else has their results coming this week and I can't remember who it is.Thinking isn't high on my list right now.lol I never thought I would ever see this day in my lifetime.Hell they didn't even try to kill me this time which is a major bonus. :)
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Hi all I very much appreciated the response to my post, I saw my Doctor yesterday 11/17/15 and he said he put me on the Harvoni with the Ribavarin because I tried the Interfreon with Ribavarin years ago I only took three injections and I stopped but he said it didn't matter and he said also because of the amount of scar tissue on my liver, but I'm still Hep C 1a, anyway I told him I feel like the Ribavarin was killing me, feet all blistering and swelling all the way to my knees, and the anxiety, I want to crawl out of my own skin, so I only have 6 more days left on both medications and my doctor gave me a prescription of Alprazolam .5mg for the anxiety , I actually had to take two at once last night and I was able to actually sleep all night and that terrible feeling I have been suffering with seems a lot better, so I have 6 days left and I will be finished on 11/24/15, thank you GOD, I believe the medication my doctor gave me is also called Xanax it seemed to really do the trick, I feel like I have been having every side effect know from the Ribavarin and it just all started building up in me over the weeks, I first noticed my feet swelled all up and then they would go down one foot first then the other one and then they would start again, very hard to even get my regular shoes on, but just 6 more days I can do it now because that terrible anxiety seems under control for right now , this 12 week journey has not been a cake walk, at night when I would lay down to try to sleep I felt like if I actually fell asleep that I would stop breathing and die, this last month has been hell to go through if anybody else is having these anxiety feeling talk to your doctor about being put on the Xanax because so far it seems to be working for me
Thank you all
Mike
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Good on you for getting help to get through your treatment Mike. You are nearly there!
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Hi mike,
Those ribas are terrible. I had them before in my first tx but it was not as bad as this time. I also had every RIBA event known to man and woman. I went off the ribas at 12 weeks which was a week ago and am going through more sxs like it's ribas in reverse or something. I am on Valium and Temazepam t o sleep. It ain't no picnic. I know others have done the ribas without sxs but a few of us have been bad. One nearly gave up, so credit yourself for hanging in, especially through those long nights. Cal :)
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Bill. I'm so happy for you!!! I called my doctor for my results earlier today because the lab told me 2-3 days but my doctor said it takes more like a week. Since I had them done on Saturday I'm guessing Friday or Monday. I'm not sweating it. I know I'll be way down in numbers! Way to go on undetectable!
Cali - any news yet?
Mike - I've been on alprazolam for over a year now. Yes it is the generic form of Xanax, and it helps a lot with the anxiety. I was also taking ambien for sleep but I would wake up with my heart racing and a headache. My doctor just added an extra Xanax to replace the ambien. I sleep better, wake up calmer and haven't had headaches. Best of luck to you.
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JAF,
Cal Pal did get her results....and...UD!! She will pipe up soon I am sure on this thread.
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I'm so happy for both of you!! Hope to be posting mine any day now.
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Good morning Jaf and thank you.You were the one I couldn't think of that also had news coming this week.I couldn't remember for the life of me who it was.I'm pulling for you and know you're going to ace this test,and I can't wait to hear your results.Having 3 of us with UD in one week would be amazing.Get your dancing shoes out because you're going to need them. :)
“Fairy tales are more than true;not because they tell us that dragons exist,but
because they tell us that dragons can be beaten.”
― Neil Gaiman
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They finally posted my results online.Now I feel like it's real. :)
Plasma (substance) Specimen
Collected on 12 Nov 2015 @ 1029 at VIERA CBOC (EFF. 10/1/06)
Test results slightly outside the reference range are not unusual. Your provider has reviewed your test results and will contact you for any important issues. If you have further questions, please do not hesitate to contact your primary care provider. If you have an amended test and you want to see the history, go to the Comments on the Details page.
Test Name Result Units Reference Range Test Details
HEPATITIS C VIRUS RNA Not detected IU/mL >=12-<=100,000,000 Details
HEPATITIS C VIRUS RNA Not detected log10 >=1.08-<=8.0 Details
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Hi ?Jaf,
Isn't it awful waiting, waiting...thank you fir your wishes. It's early morning in Australia so I'll look in today to see if you've posted. As Bill said 3 in one week would be awesome! Cal :)
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Hi Bill,
I picked up a hard copy from my GP yesterday, it was so nice to see it. I showed
It to my family and they were really happy for me. To see it makes itsoooo real! Cal :)
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BillT,
That must be the best words to read in your life!!
And it is so nice for me to read it, it gives so much positive feelings :)
Madelief
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Congrats everyone. So much good news these days!!!
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Bill;
So happy for you
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Bill, there you go WINNING!!! Love to hear it! congrats
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It's such a great feeling to see the actual result Cal.I can't think of a better feeling in the world.I knew you were going to be fine.Now see how easy that was? :)
Madelief I try to laugh every chance I get.Every time I see another dragon die it puts a smile on my face.Your good news is just around the corner and I can't wait for it. :)
I never thought I would see days like these Else.It makes everything we go through to get here worth it. :)
Thank you Cindy.We're batting 1000 so far this week.I can't wait for Jaf's news. :)
Thank you to Rosie.I loved hearing it to.The only problem I see now is who's going to get to lead the conga line. 8)
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I couldn't resist. :)
https://www.youtube.com/watch?v=pvS2OtG2SHc
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Nice! 8) 8) 8)
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Superb Bill. Cal :)
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You are!conga leader 8) 8) 8) 8) 8) 8)
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I'm so happy.I put off my Thanksgiving so I could celebrate it today.As of tonight I finish up week 6 of my tx.I'm UD and officially half way through.Life is good. 8)
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1/2 home Bill! Life is indeed good! ;D Enjoy your Thanksgiving.
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Wish you a very happy thanksgiving :)
Madelief
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Happy Thanksgiving to all! We are counting our blessings on this forum...so happy for all the svr's!!!!!
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Bill, I know what You mean! I say screw it, I'm celebrating for a week or until Sx.s take over again. Still lead Man in the Conga line? I'm the whip bringing up there rear!
Hey there Rosie! How goes it in Your world?
Madelief, Hope Life & Tx. are treating You well.
This is truly a time of giving thanks. Amazing times We live in with all of the Medical breakthroughs and treatment now and on the Horizon! Be well all and enjoy Your New Lives!
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Hi a Tommy,
His are you my friend? You sound better date I say? I'm in post tx stage now. It's over 2 weeks ince I stopped ribas.still have 3 weeks approx to go am doing 17? Weeks now (odd number). Just getting as much Viekira as we can. Cal :)
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Funny You should ask Madam! I was just looking around for You to check on You. Feeling good right at the moment. Actually the last couple of days. How are things down under in the Land of Oz? Still having some Riba withdrawal sides? I know a couple of weeks back talking with Drummerman that He was having a rough go even after the Ribas. Seems it takes a lot longer to get them out of Your system than the other Meds. Hope You are doing better. You are in the home stretch of Tx. My Dear ;D ;D ;D. If only the Viekira will be nice to You as You coast to the end of Your Epic trials & tribulations of Tx. 8) 8) 8) 8) 8)
I'M NOT CRAZY--I'M JUST SPECIAL!! NO WAIT, MAYBE I AM CRAZY--ONE SECOND....I HAVE TO TALK TO MYSELF ABOUT THIS, HOLD ON.........
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You're crazy Tommy! Magnificently so. ;D Wonderfully so! 8) 8) 8)
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So says the CRAZY LADY WITH THE COOKIES!!!!. No offense, Me like cookie!!! NOM NOM NOM :) :) :) :)
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;) Have you started The Walking Dead yet?
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Checking the channels for marathons over the weekends. Got My machete and pistol ready to go. Now I need to bake Me some cookies :P ::) ??? ;D 8). Maybe I'll go to the bakery!!!! :) :) :) :)
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I'm going old school. "The Twilight Zone". Those shows really hold up! Good ol' Rod Serling (and too many leftover desserts to name :o) What a combo! ;D
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O.K., this is going to date Me. What about Wierd or Eerie. Used to come on late Friday night. Use to have to beg to stay up late to watch them. Ma always said " NO, They will give You nightmares!!"
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Hmmm. Doesn't ring a bell. The only other "spooky" I remember was "The Outer Limits". I wasn't supposed to watch either one. ::) Great way to make sure a kid tunes into a show! :)
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Hi Tommy,
SO good that you are starting to feel better. I have been wondering about Drummerman. I know he had it rough on the ribas too poor thing. Yeah I'm in the middle of post tx. I should be on the "Other side" I think, but still have 3 weeks Viekira to go. Yeah feeling pretty rough but underneath that I have all this energy! If only my body would cooperate I could really have a good time. Danced to Some oldie this morning, Queen, Michael Jackson, Nirvana. I am listening to Pink Floyd now. All in all you're just another brick in the wall! I've decided that's my exercise of choice some manic dancing to push these muscles back into gear. It provides by two sons with a laugh watching me anyways......Cal 8)
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Else,
Twightlight Zone, boy that was the ultimate in scary in it's day! I am not liking the new AMerican Horror Story. I loved the other ones. Cal :)
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Cal!!! LMAO picturing you doing the moonwalk or lip-syncing Freddie Mercury. ;D You're on the mend for sure.
Funny thing. I just couldn't do American Horror Story (despite my apparent bloodlust vis-a-vis walkers, erm, I mean zombies). I must have caught an especially creepy episode. :o
I'm tellin' ya, Twilight Zone is STILL awesome - and Netflixable. Great writing like this is timeless. This is my kinda night! :)
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Okay everyone, let's join Cal in manic dancing exercising. here is some Queen to start us off.
I've paid my dues
Time after time.
I've done my sentence
But committed no crime.
And bad mistakes ‒
I've made a few.
I've had my share of sand kicked in my face
But I've come through.
(And I need just go on and on, and on, and on)
We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions.
We are the champions.
No time for losers
'Cause we are the champions of the world.
I've taken my bows
And my curtain calls
You brought me fame and fortune and everything that goes with it
I thank you all
But it's been no bed of roses,
No pleasure cruise.
I consider it a challenge before the whole human race
And I ain't gonna lose.
(And I need just go on and on, and on, and on)
We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions.
We are the champions.
No time for losers
'Cause we are the champions of the world.
We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions.
We are the champions.
No time for losers
'Cause we are the champions.
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Else,
Yes I certainly have not got that apathy thing happening. I am re covering the dining chairs, I've done 3 in today's. I have this new real energy, I love it! But body says No! I'm going to make you have pain and weakness so stop now and lie down! We have yo come to some negotiable compromise. 8)
No couldn't grab the characters if plot line in this season of American Horror Story at all. Writing has always been superb. Favourites are mental asylum, which was awesome and the freaks. Cal :)
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Chuck,
We are the champions aren't we? Love Queen, love Freddie may he rip. Nothing like a big singalong to Queen. I think we should include that with the conga line, some rowdy collective bohemian Rhapsody singing followed by we are the champions! Maybe even some air guitar to Hotel California? Cal 8)
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Cal,
sounds like a plan to me. but we got to add some Floyd in there as we tear down the wall
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Hi Tommy,I'm glad you're doing ok.My sx come and go.When I do get them it's just kind of a all around miserable feeling.The fatigue and insomnia are the worst parts of it now.The Godsend is that this is NOTHING like the Peg tx.
Ok now that we've talked shop it's on to the important stuff that life is made of.I'm not sure whether to laugh or cry at the thought of Cal sweating to the oldies. :) I miss the Twilight Zone and Outer Limits.They don't make them like that anymore.The Walking Dead is good but I still love the old one's.Else you should be ashamed asking someone here if they started the Walking Dead yet. ::) I do have to agree with everyone about American Horror Story.It started out good but once they went vampire they lost me.It does have a great cast though.
And now on to the music.When you don't know what to listen to put on some Beatles. ;) I love music.I was raised on the classics,and Big Band...and then Elvis came along and my father disowned me. 8)
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Well I might have to give American Horror another try then.
Chuck, those lyrics are perfect for this forum! 8) ;D 8)
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Give it another try Else,I just like zombies better. :) Btw In case anyone was wondering yes I was about 5 when my father disowned me because of Elvis.We used to go to Philly for Sunday dinners(I'm Italian and German :))and whenever anyone was looking for me I was in the music room listening to my much older cousins records.My father was career military and he lightened up on Elvis when he joined the Army.
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hey Chuck,
Appropriate theme for us heppers...I should say x-heppers but, I don't want to jinx my EOT. Prog Rock yo! Dark side of the Moon, my fave Floyd. King Crimson anybody? :D
Else- yea, whats the deal with the zombie apocalypse obsession. I could not put the book 'World War Z' and still keep watching Walking Dead and Fear the Walking Dead, even though I an starting to get sick of all the characters. Even Glen not dying barely affected me. Twilight Zone was the bomb.
Cal- Dancing party at Bree's house.
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In The Court Of The Crimson King has always been one of my favorites Beto.Well done.
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Chuck,
All in all your just another brick in the wall! Yes Floyd. I was listening to it yesterday too. Have to have them at our virtual party at Brees. Cal 8)
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Hi Bill,
I'm glad you clarified the age thing. I was thinking how old is this dude?,he he. Yes Beatles fir sure, which songs?
My sister married in Vegas with an Elvis Impersonator. It was such fun. Vive Las Vegas. I always lived Teddy Bear. ;D cal
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Beto,
Had to you tube King Crimson. I may have heard if them and forgot,who knows. Not me? Cal :o
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Thinking of you guys & pow there you are talking scary shows!I have nightmares without the late night tv...so right now seeking music & comedy.easy watching but maybe after svr I'll get adventurous & do walking dead marathon!Tommy ,Else & Cal glad to hear you are doing well.Chuck loved the we are champion lyrics...they sure fit!
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Hi Bill,
I'm glad you clarified the age thing. I was thinking how old is this dude?,he he. Yes Beatles fir sure, which songs?
My sister married in Vegas with an Elvis Impersonator. It was such fun. Vive Las Vegas. I always lived Teddy Bear. ;D cal
We have (or had, haven't seen him in a while) a "Frozen Elvis" in one of our city parks. Very authentically-dressed Elvis impersonator, a real lookalike, who would stand frozen in a typical Elvis pose until someone chucked a buck into his guitar case, at which point he comes to life and does a short bit of Jailhouse Rock or other favourites.
kim
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Hi Rosie,
I think comedy is the way to go whilst on tx :o I am loving your Amy Schumer. My favourite comedies are The Office (English) Extras (Ricky Gervais again), The I.T. Crowd written by my favourite comedy writer Graham Lineham, I also like your Big Bang Theory, Sheldon is hilarious, Alan Partridge (English), I love anything with Ben Stiller or Will Ferrel. Just love any comedy really! Cal ;D
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Hi Kim,
A frozen Elvis! What an imaginative and creative way to make money. I love the theatre of it all. I love Vegas so did my boys, we would holiday there anytime. Lots to do and see. The beautiful Grand Canyon wow! It was the best holiday. Cal ;D
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Hi Kim,
A frozen Elvis! What an imaginative and creative way to make money. I love the theatre of it all. I love Vegas so did my boys, we would holiday there anytime. Lots to do and see. The beautiful Grand Canyon wow! It was the best holiday. Cal ;D
I have always wanted to see the Grand Canyon. Still time. I hear it's not going anywhere... ;)
kim
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I'm talking about the Beatles Cal and you ask which song?Shame on you.You should know by now you can't pick just one. :)
https://www.youtube.com/watch?v=Y6GNEEi7x4c
Kim I saw a lot of the frozen artists in Europe but never a Elvis.lol I like the idea though.Barcelona had some amazing ones.I couldn't stay still for that long myself. :)
Rosie haven't you learned we do scary very well here? ::)
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Kim,
I live in the Grand Canyon state. I have only been twice and that was just looking over the edge when there on business. Tragic. However, even from that perspective in is magnificent. Photos just do not do it justice.
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Kim,
Yes you must see the Grand Canyon! It defies words. Cal :)
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Bill,
I have records on my wall above the piano. I have Twist and Shout and Magical Mystery tour. You are right..which song? What a catalogue. Cal :)
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Beto,
We drive fron Vegas to the Grand Canyon. We hired a Cadillac, you have such big cars there! It was an amazing drive. Watching the landscape change from desert to lush forest. It snowed too, which made it even more beautiful. I agree it has to be seen to feel it. Cal :)
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I have a question for everyone.I'm sure it's happened but can anyone remember seeing a post that someone didn't get SVR or relapsed on Viekira?For the life of me can't remember seeing one here.Thanks
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Hi Bill,
I haven't seen a relapse on this forum, but I have on another forum. But you don't know the circumstances regarding whether they had previous tx with an NSA or an NS5A and had RAV. Resistance.
Statistically 30% of people will have resistance but it is so variable as to how it mutates. Also things like time lapsed between txs. Some resistant mutation go WILD after a few years. Though they really don't know what happens to them yet. There are no studies yet. Well there are small ones but nothing published or conclusive.
If your Geno 1b you'll be ok, that geno seems to not create RAVS but 1A is different. We are all guinea pigs here. It is all so new.
I have had resistance studies done, but haven't got them back, as they are being done by a Scientist as it's not a test commonly done. Though it will be with relapsers on these DAA's. I am a high risk relapse because I have txed on both those drugs, but that doesn't mean I won't SVR. Everyone is different. It is hard to be an exact Science. However, Merck and Gilead have new drugs on the table which override RAV's. So everyone will be txed sooner or later. Cal
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That question was more out of curiosity Cal.I do know the meds are indicted for certain genotypes and other factors as you said.I got to thinking about it because I remember someone saying on the forum here(if I'm not mistaken)that in Australia they were 100% with the Viekria,and I didn't remember seeing anyone on this forum that had not gotten to SVR or relapsed.I just thought it was interesting,in a great way,that we haven't seen one yet here.Us Viekirians are an amazing species. 8)
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Bill,
Viekirians do it better 8)
We are just getting into the SVR area now with our forum family. Viekira was passed by the FDA a lot later than Harvoni, so it's still in action. But we've had some bloody good results so far. Were in a new era of tx Bill. The stuff dreams are made of. Cal
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Bill and conga liners,
Dancing to BTO. You ain't seen nothin yet! Cal :)
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Bill and Cal there was one forum member - cullotta -who posted that she did not make full treatment on vikiera pack. She experienced a return of viral load before end of treatment. Genotype 1b too which is really mysterious because that has been the dream genotype for easy treatment and good results.
Cullotta are if you are still out there please check back in with an update.
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My treating hospital is batting 100% so far on Viekira. No relapses, no breakthroughs. I'm looking good for their stats (see most recent figures below). I know of one person here who didn't clear but that's it.
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Hi Sappphire,
If Culotta had breakthrough before EOT then she would have had RAVs. 30% of the population naturally have RAVs let alone those of us who txed before on those resistance forming categories of drugs. Unusual that she was 1B that affords a very high clearance rate. But as I said statistically some of us won't clear. In waiting around to see if I relapse, I just wish I had had viral breakthrough during tx. I am not looking forward to my EOT 12 week wait in 13 days time!
Statistically some of us won't make it. But like I said, there are new resistance drugs from Merck and Gilead, which came out of the San Francisco Liver Conference 2 weeks ago. So it's brave new frontier for all of us.
Philly that's great that it's 100% at St. Vincents so far. You'll be fine too. Cal :)
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Question,
I was on the old treatment and took the riba.As I've said before I don't remember having the riba rage,and was wondering if the riba being prescribed now is the same as I took then?If it's not I'm thinking the rage could be part of whatever changes were made to it since then.Any thoughts?
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Hi Bill,
I had RIBA rage with my previous tx! I seem to be especially sensitive to ribas. They have floored me this time. My skin slit open again yesterday and it's 3 weeks post ribas already. Cal :)
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I've had 3 days of being nervous,stressed,anxious,and sleep is nonexistent.I have no idea what's going on.I'm still grateful I've had so few sx but this has been ugly and annoying.
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Hi Bill,
Sorry you've got some horrible sxs there. I had anxiety in the beginning and got Valium from the GP. I also take a an ant histamine fir the itch which doubles as a sleep pill. But early days I took Temazepam. If it keeps going get some drugs, you need to sleep and being anxious and stressed is revolting. Cal :)
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Hey Bill. Insomnia exacerbates everything! I'd listen to the Viekirians on this - maybe get some medication that helps with the anxiety short-term.
From what I've read on these forums, the ribavirin dispensed these days often does cause the exact side-effects you're describing. And there's help for it!
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Bill, the absolute WORST time for me was when I didn't get enough sleep. It magnified everything. It's the only time I truly lost it.
Do what you need to to get some sleep. You'll feel better almost immediately.
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Hi all this is Mike again, I contacted Hep C in 1983 and was diagnosed at the VA. Hospital with pneumonia , Hep non A non B and also I had Celulitis infection on my left shine, I was a pretty sick boy, will anyway I have Hep C 1a and frirosis score F3, I started the Harvoni Nd Ribavarin o Sept. 2nd, 2015, at the start of the 10th week I started having these horrible anxiety like I could not stand to be in my own skin, plus I started having really bad pain in my left rib cage, so the start of the 11th week I skipped a Saturday and Sunday dose of Ribavarin , on Monday I contacted my GI doctor and he convinced me not to stop the Ribavarin , so I took it on that Monday and I saw the Doc on Tuesday , I showed him how tore up my feet were all broke out and I explained the anxiety he prescribed me Xanax for it and it has helped some and I finished the rest of the Harvoni and Ribavarin on 11/24/2015, I'm still having the anxiety, but not as bad as before and my rib cage as stopped hurting and my feet seem to be getting better, but it's the anxiety that is still bothering me, I see the Doc on 12/15/2015 and I will find out if my blood work shows me free of the Hep C, I sure hope I didn't mess it up by missing two days of the Ribavarin , I was just wondering if anybody out there has an opinion about me missing two days of the Ribavarin , I still took the Harvoni I never missed a dose of the Harvoni, I would appreciate any thoughts on this, my blood work at 4 weeks showed me clear of the Hep C, now I 'm really worrying, I hope I didn't go through 12 weeks and screw it up because of two days that I went crazy in my mind, I actually felt and thought that the Ribavarin was killing me.
Thanks Mike from California
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Hi Mike. In my opinion, skipping those 2 days of ribavirin in your 11th week of a 12-week treatment is not likely to have any effect on your treatment outcome. Many people are dose-reduced on ribavirin by their doctors because of side effects, and in extreme cases ribavirin is sometimes stopped mid-way through treatment. From what I have heard, even those people are still getting cured with the new drugs. So I really don't think you need to worry about skipping 2 days of ribavirin at the tail end of your treatment.
As for the anxiety, it does take a while for the ribavirin side effects to wear off after finishing treatment. They don't go away immediately - perhaps because the ribavirin lingers in the system for so long.
Keep the faith. I'm sure you will have good news whenever you get your viral load done.
kim :)
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Hi Mike, while I didn't miss a dose of ribavirin, I did dose reduce from week 2 onwards due to skyrocketing bilirubin. From week 2 I only took 1 tablet am and 1 tablet pm instead of 3 tabs am and 2 tabs pm.
I cleared the virus and I'm f4 and was a bit tricky to treat. thats my experience!
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Thanks guys, that information makes me feel a bit better, I still am having trouble sleeping at night, I'm usually up almost all night and finally might fall asleep around 5am and wake up around 10am, I wish I could fall asleep early so I could feel more refreshed and have more energy
Thanks Mike in California
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Hi guys, it's Mike from California again, you know I stopped taking all my vitamines when I started taking the Harvoni and Ribavarin because my doctor told me to stop all vitamines, I completed my 12 weeks on November 24th 2015, I hope it is ok to take them again because I started taking them again yesterday 12/7/2015, does anybody have any thoughts on this, I would appreciate any feed back.
Thanks Mike in California
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I think you are fine to resume vitamins and supplements after finishing treatment - unless you notice them causing you any problems (digestive upset, flank soreness, etc.). Just my opinion. I am not a doctor.
kim
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Hi Mike,
RIBA is a mean drug and it can take months to get out of the system. I stopped it after 12 weeks and am doing 17 weeks of Viekira.
I have heard others on this forum talking about a phone number you can call at Gilead to speak to a nurse who can advise you about things like vitamins etc. anything medical to do with Harvoni. Try them.
Anxiety will pass. I am on Valium for anxiety and I take Temazepam if I can't sleep. You may need to get something to help with sleep. It sounds like your suffering unnecessarily. If you don't sleep then everything is worse, including anxiety. You need to sleep. Cal :)
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Today I complete week 8 and and pick up my last 4 weeks of meds.Don't get in my way at the pharmacy. 8)
There's so many of us finishing and I'm thrilled for all of us.It's getting better all the time. :)
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Well they won't do a VL again until EOT.My white count went from 11 to 13 but AST is 12 and my ALT 13.I. hate texting.Hell l hate phones? 8?
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I'm back at the beach so I can add more to the discussion I had at my appointment Friday.We talked about my white blood count being up.There was a discussion we had on a thread here about it taking longer to get the dragon out of the deep tissue.She said it takes out what's in the blood and we can show up UD but still have some in the liver and such that takes time to get.Also,and I forget who it was,said that they had a F4 scan when they started and dropped to a F1-F2.She told me they've had one person there that started at F-4 and dropped 10 points by EOT.I asked and they scheduled me for another Fibroscan 6 months EOT.Just wanted to pass all this on.
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Hi Bill,
Yeah the virus hides, it's sneaky. I'm glad I did extra time to get the sneaky bits.
That's great news about the fibro score. Cal :)
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I'm so happy for you, Bill! Here's to catching the sneaky bits! 8)
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I can't believe that after tomorrow I only have 14 days left.I thought I was going to finish on the 9th but it turns out the 8th is my last day.I'm so over sucking down pills and I'm ready to be done with this.Happy Christmas to those that celebrate it,and Happy Holidays to those that don't. :)
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Nearly there Bill!
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I know Hun.I'm just feeling like I'm being pulled in every direction right now and I need some normal in my life again.Thanks
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So close!!! Hang in there.
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Hi Mike,
on your insomnia problem, I had the same thing going on, going to sleep at 3-5am and waking up 6-8am, so I changed the time I took my doses, from 9am and 9pm to 6am and 5-6pm so I am able to go to sleep around midnight - 1am. but still waking up 3-4 am. unless I take something to help me sleep. then 5-6am. I normally only sleep 4-5 hrs a day, been like that my entire life, but now only sleeping 3-4 hrs a day. but there have been a few days where I only get 2 hrs of sleep. so you can try changing the time you take pills, for me 2 hours after I take my pills is when they kick in and I can feel them for about another 3-4 hours after that. the insomnia, extra energy, etc.
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Sometimes I think the closer we get to EOT the harder it becomes. It will end. This will be worth it.
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I agree Philly.The odd thing is I take blood pressure meds every day and that doesn't bother me.It's just these meds and this treatment.
https://www.youtube.com/watch?v=zge6UEwUGn0
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This is so much more important. So much more. I think that's why it's high pressure - it's high stakes.
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Thanks Philly.I just mentally hit a rough patch for a few days.Today starts my last 14 days and I'm ready to go the distance and finish the dragon off. 8)
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Look at it this way Bill...you are undetected and your liver enzymes are hockey scores. You have a s%#@ load of new friends that get you and you are no longer a biohazard :)
That said, this is the place to spill the beans and not feel you have to edit your commentary. You and many of the riba folks were hit pretty hard with sides. The sleep thing has got to suck. You will begin 2016 riba and hep free. Good luck on the countdown.
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Bill, ditto every word beto said. About those hockey scores: I have enzyme envy!
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Enzyme envy? ;D ;D Good one. No kidding, Bill. Those are some fine looking numbers. :D
So close to the finish line! Maybe you'll get my post-treatment narcolepsy to make up for the insomnia. Seriously. I can't seem to stay awake past 7pm. And it seems like Dec 21st was yesterday.
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Yup, Else, at about the same time period post-Tx the Sandman was visiting me a LOT. They say you can't make up lost sleep, but it sure felt like that was what was going on. You should be back to normal hours pretty soon.
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Hello I have no idea where to post this so here goes. I have no support from family or friends and my side effects are getting worse at day 33. The first month I only had 3 bad days now I ache everywhere, can't think straight, my hands are killing me and so is my right hip. I had zero symptoms before I started and of course its worth it but I thought it would get easier but for me it's getting worse especially the fatigue.. My Dr has no input except asking me if I want to stop which of course I will not. All I want is some support that others go through this too. I was told zero to no side effects and its just not true. I am supposed to vacation tomorrow and frankly I am worried about going but the ticket is non-refundable and was booked before I was approved for the Harvoni. Any input on how to alleviate some of these side effects would be very much appreciated.
Thank you.
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Carly, I'm sorry you are one of those who have a rough time on Harvoni. There are others here -- Slats1056 (real name Tommy) immediately comes to mind, due to your mentioning "can't think straight" and "fatigue." He's also been plagued by headaches and body aches. Despite all of his side effects, he managed to work full-time, be a family man, etc.
If you are not already drinking plenty of fluids, aim for one ounce per 2 pounds of body weight, minimum 8 cups/day of mostly water. And if you can continue to exercise daily despite the pain, you'll be better off than if you avoid all pain. I had intermittent, strong aches and pains, despite which I did as much of my regular exercise routine as I could, and I made sure to walk a lot.
Good for you that you plan to persevere. Your travel may actually be a good idea, since distraction is a scientifically documented form of pain relief!
These forums exist because many members have no support from family or friends. Here, we understand and will be your cheerleaders as you keep your eyes on the prize: an HCV-free life. You've already finished more than one bottle, so you're well on your way.
Gnatty
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Dear Gnatty!
Thank you so much for answering me! I am working full time albeit not up to expectations. I have had no headaches or insomnia but the fuzziness just started today. I am definitely not drinking enough water and I will start, thanks for the advice !
Do you know if switching the time I take it would stop the daytime effects. My Dr had no advice, said it doesn't matter. I take it at 2:05 pm ( The exact time it was delivered to me thankfully) and by 6:00 pm I am usually feeling better. Its when I wake up @ 7:00 am until 6:00 pm that are the difficult hours. For some odd reason I cannot figure out the math to determine an alternative time to take it. Any thoughts? 2:00 am?
Thanks again for answering me.
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Carly, you can definitely adjust the time so the side effects interfere as little as possible with what you need to do. A lot of people have adjusted their pill-taking time. It's best to adjust by two hours or so per day until you reach the time you prefer. As to what time is best, it'd be ideal if you can sleep through the worst, so you'll be conducting a scientific experiment to learn the best time. If you begin the gradual adjustment by taking the pill at noon (or 12:05) tomorrow, you can see if 5 am until 4 pm become the difficult hours. (Hopefully, you'll still be asleep through the first difficult hours.) If you then take the pill at 10 am on Monday, you'll see if the difficulties lessen at 2 pm, etc.
Harvoni definitely likes lots of fluids to help flush out the HCV evildoers. I wonder if insufficient water over time has led to the fuzziness. Please let us know what you discover.
Gnatty
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Hi Carly,
You definitely came to the right place to get the support you need and questions answered.I feel bad now when I realize how minor my problems are when some people are getting hammered.The brain fog seems to hit a lot of people taking the Harvoni but tends to go away after a while.I'm on Viekira so I can't help much.I hope things get better for you.Keep us posted on how you're doing.
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Thank you Beto,Gnatty,and Else.I know I'm close and everything is looking good.Like I said I just had a few bad days.I'm going to suck it up,and shut up now like a true Viekirian and get this done.You all know just the right things to say. 8)
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I was just thinking(God help you all)that we should start a thread and list the of side effects and note what med,or meds seem to be causing them,and things that help(if any),and we could modify it as we go along.Just a thought.
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I was looking to see what I could find on the next generation of Hep C drugs.There wasn't much but I did find this.Have a look at page 3.
http://www.webmd.com/hepatitis/features/treatment-for-hep-c?page=3
I also found this that I posted in the HIV/HVC section.I thought the relapse because of a different strain that didn't show up in the initial tests was food for thought.
http://www.webmd.com/hepatitis/features/treatment-for-hep-c?page=3