Hep C Discussion Forum

rblood · Member

RE: Sides

CHepCFree · Newbie

It is recommended that side effects be reported to Gilead or directly to the FDA. Gilead passes the on to the FDA. They would not tell me how often but they said they do. I am on week 8 and have horrible ringing in my ears. I have an ENT appt on Wednesday.

Scruffy · Guru

Hiya 4L

Keep on plugging along even if it gets hard at times. I made sure I kept fairly active all threw my treatment. Although I was on a different meds. If I didn't it would have taken far longer for me to recover.

Dragonfly

Beside your cirrhosis you can blame a lot of those sx's on the ribivirin. Thank God we are seeing less ribavirin with the new combo's. I think I had more sides because of the riba than the peg or the incivek.

Heres to every one reaching SVR ( toasts with a glass of water )

fourlocos · Senior Member

Hi Dragonfly Wow you have quite a list. It jumped out at me that you also had leg and feet cramps. That is my only real side effect that I have really found troublesome enough to see my primary doctor about. At least maybe it is a treatment related side and it will resolve itself after I am done. I work on my feet and do a couple a mile walk everyday with my dog. I am still plugging along but it is painful! I know you did a different treatment but I am hopeful now that this too shall pass. Thank you.

dragonfly · Senior Member

Hi,

I was on Solvadi, Daclatisvir and ribavirin for 12 weeks. (I would mention here that I am less than 5ft tall, normally weigh about 7.4 stone and have decompensated cirrhosis at score 6 so these meds may have affected me given my condition.) Having said that I will list what I experienced but it won't be the same for others and despite all this I was negative at 2 weeks.

breathlessness

nausea

vomiting

itching

restless legs

very low blood pressure

insomnia

various skeletal/muscular aches and pains

jaundice

cramping in hands and feet

loss of appetite (consequently weight loss of 5K in 2 weeks)

depression

hair loss

This is as far as I can remember (oh and short term memory loss - but that's probably to do with age!).

I don't know if this will help anyone but feel free to ask me any questions.

Nx

Tig · Admin

Hey Scruffy,

I'm not laughing at the thought of problematic side effects, but I am laughing (smiling) about what you had to say! It would be quite a change from the last two years I've been reading these posts. When you and I started the IFN backboned treatments, this forum was a Godsend. It was where so many gravitated to for solutions for the cruel and often debilitating side effects. It's wonderful to see a lack of extreme participation (?) on this thread, but I know that if anyone posts a problem, they can rest assured that we'll do all we can to help them resolve it. I wish you all continued smooth seas...

Tig

Scruffy · Guru

This is great. A post in the "on treatment" section about side effects with three posts. biggrin biggrin

A year to a year and a half ago every topic in this section was side effects. I hope to see some people that didn't make it through treatment back.

I hope you all have easy sailing.

dragonfly · Senior Member

Totally agree with you!

Tig · Admin

I think if people are going to add their own experiences to this discussion, it would be helpful to have them place their own protocol in their signature area to avoid confusion or at least mention it in their post. If you're on Sovaldi and Olysio, or Harvoni, etc., make it clear that these are the medications you are bringing to the discussion. It would be helpful to not blend SFX of one protocol with another.

Tig

fourlocos · Senior Member

Not sure which treatment your on Dragonfly but I am on 8 weeks of Harvoni. I had a couple first rougher days. Some serious fatigue for a the first few weeks but still worked 7 days a week till Christmas time. So I did it but it was a dragging my butt sort of thing. I still managed to even wallk 2 miles many days with my dog too. I had some insomnia here and there but mainly have slept better than I ever have before. My aches and pains were more intense the first month with them lessening daily now that I am at 5 weeks. My post is found under treatment but I have had leg cramping type things and now my foot is killing me with a crampy nerve type pain. That has been the worst so far. It's been rather tolerable considering that I don't normally handle medications well. With all I wrote for anyone new, I still worked daily and lived my life. So it's not that bad. Just now that my foot is messed up it is a challenge but off to work I will go shortly. I muddle through mostly everything. I have many fears also. Prior to treatment and now during it. Will eight weeks be enough? Am I doing all this for nothing? Will it work? Frustration for me is my GI doctor. Doesn't seem to think that anything is a side effect other than fatigue. Won't even discuss it with me. He just refers me off to my primary doctor who I will see on Monday. If I even mention the forum or the internet he sighs and rolls his eyes. Told me that anything I read on the internet isn't true and that only anxious people would even do that. LOL. Gee thanks Doc.

dragonfly · Senior Member

I don't know about anyone else but I think that there is so little info on these new and much welcomed drugs that maybe we should compile some kind of list of sides. Some physicians know about these but most don't and you feel that you can't keep going to see them for hand cramps, itching etc. Anyone who has finished treatment would be in a position to say how long they lasted for them. Even my consultant who is involved with recording and researching my drugs was at a loss to explain why I was seriously ill one day and my bloods were totally different the next. Don't get me wrong - these drugs work and I am grateful for the opportunity I was given but a lot of the time I was scared and had nobody to ask as only 300 people throughout the UK have been put on them. Just a thought. Nx

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