Discussing medical facts when you are not qualified.

[Murray]

I hope it's ok to start a new post. I was replying to an old post and it recommended starting anew because it was past 6o days. The reason for this post is I feel somewhat judged for having side effects. and also that just because you taken Harvoni doesn't make you a medical practitioner.

I've just read this thread and I can't help but be amazed at all of the "OPINIONS" about Harvoni and it's efficacy, side effects, etc. I kind of laugh at all you "experts" that really don't no anything about the disease, the liver, and medication. The only reason this forum should exist it to offer your experience.
In my case, back in 1990 one of the top hep C docs at Mt. Sinai in NYC told me after a biopsy that I'd  need a liver transplant in 5 years if I didn't start Interferon. After some research I declined. And this same scenario continued over and over. Your going to die if you don't treat. So fast forward 25 years I'm still here and so is my HCV. And I was healthy as hell too with F1-2 cirrhosis. Now Harvoni comes along and I'm told it's a wonder drug with no side effects and a 96% efficacy rate. So I start it. First 2 weeks are great but then the fun begins. I have the fatigue, nausea, diharea, severe joint pain, etc. I am not making this up, I am pretty certain that it's a side effect. But to come here and have some yahoos allude to us with side effects not really knowing if it's actually from the Harvoni is terrible JUST SHARE YOUR EXPERIENCE, NOT MEDICAL ADVICE..
None of us really know what the long term effects of this stuff is. But I come here for support not judgement. If your not a liver specialist don't discuss medical opinion.
For all those suffering, you're not crazy. This shit can be nasty. I know 5 people that have taken it and 4 had bad side effete some continuing after TX Again I tell my story because of all the people giving advice like - you have to take it, side effects may be something else, and especially putting out the idea that discussing side effects may cause others to not take Harvoni!! EXPERIENCE ONLY!!

[Coach Mike]

Side effects affect everyone differently. People shouldn't take others peoples' advice as anything more than their personal opinion. Even doctors-the good ones-tell their patients they are the ones that have the only perspective that matters. I have had no side effects whatsoever on Harvoni, but have no doubt you are. Its interesting that your treatment side effects are almost identical to my symptoms I had for years before I was diagnosed with HCV. My doctors probably thought I was a hypochondriac. Now that I am nearly 3 weeks into treatment, they have largely disappeared for the first time in twenty years.
Good luck!
Mike

[Lynn K]

Hi Murray
Sorry if you got that impression from anyone here there is a whole long thread with over a thousand comments about harvoni side effects.

As my signature says I have been through a lot of treatment and have F4 Fibrosis aka cirrhosis for 8 years now but fortunately I had very little in the way of side effects just some mild headaches. I had a lot more sides from ribavirin.

But you are not alone in complaining of sides some folks are more sensitive to medications while others not as much. For me having gone through treatment with interferon based treatment 3 times Harvoni was a walk in the park as they say.

As I have advanced liver disease I had to take the risk of any future issues with this new medicine really had no choice and all I can say for me anyway is so far so good.

Sorry you are having a difficult time hope you fell better soon

wishing you a successful treatment
Lynn

[gnatcatcher]

. . . For all those suffering, you're not crazy. . . .

Murray, thank you for posting that. I hope that all who need to see it get to see it. It's got to be difficult to be experiencing lots of rough side effects when so many people on these forums are lucky enough to breeze through treatment. And you're right on when you say, "None of us really know what the long term effects of this stuff is." Taking any medicine is a cr@p shoot, and some people suffer on each one.

As for us being non-experts, ironically even the medical experts sometimes get it wrong. In your case, "one of the top hep C docs at Mt. Sinai in NYC" with his (fortunately) way-off dire prognosis, plus your current doc who (as you mentioned in another post) thinks you're exaggerating.

We're all human. Sorry for the times when we are clueless. Thanks for the reminder to stick to our experience. I'm glad you're undetected at 4 weeks. I hope you stay undetected all the way to SVR12 and 24. And I wish you didn't have to endure so much torture to get there.

Gnatty

[Murray]

Thanks guys.