Getting on with our lives after hep c and harvoni treatment, declared cured.

[Cally Balmoral]

It seems like we don't really believe a cure has been possible after all these years.  It is difficult to forge ahead with our dreams and life itself.  Side affects of harvoni have gone but I keep thinking every bump in the road must be a side affect.  I have to realize that most of it is probably my age as I have had hepc for most of my adult life. Again I think we must just accept this miracle of a cure and move on the best we can. Thanks everyone.

BALLY

[lolacme]

How long have you been cured and exactly how do you feel better? Can you share more details. I think sometimes after treatment some folks don't come back to the forum to tell us more about life after treatment. Like months I mean

[Cally Balmoral]

The tp center declared me cured about a month ago.  Until now I have had aches and pains nausea and headaches, to me, being finshed with Harvoni, wasn't the end of a myriad of symptoms.  Like others I had wondered if the end of treatment was worse than taking the Harvoni.  Finally, all those previous symptoms have gone away.  I have to remember that I am 40 years older than when I didn't have hepc.  Thank you for asking.   
Bally

[lolacme]

Thanks for sharing. Happy you are cured Cally

[Cally Balmoral]

I know that it's a tough road.  I too had tried others. Harvoni was my 4th attempt at a treatment as genotype 1 is the toughest to kill, as you know.  Also having a liver transplant in an attempt to slow down the virus.  So best wishes as you continue your journey. 

Bally

[dragonslayer]

I know that it's a tough road.  I too had tried others. Harvoni was my 4th attempt at a treatment as genotype 1 is the toughest to kill, as you know.  Also having a liver transplant in an attempt to slow down the virus.  So best wishes as you continue your journey. 

Bally

Bally, I thought genotype 3 was the toughest to cure..?


". Patients with HCV genotype 3, when compared with HCV non-3 genotypes, have relatively faster rates of fibrosis progression, higher prevalence of severe (Grade 3) steatosis, and a higher incidence of hepatocellular carcinoma.  In the interferon era, sustained virologic response (SVR) rates with genotype 3 infection with peginterferon and ribavirin therapy were in the 65 to 80% range, which was better than those seen with genotype 1, but not as good as with genotype 2. With the introduction of newer direct-acting antiviral therapies available in 2015 that are highly effective against genotype 1 and 2, treatment of genotype 3 has now become the most difficult genotype to treat."

[Cally Balmoral]

Maybe it is.  I haven't kept up on that very much.  So are probably right. Thanks for that information.  As I said before.....to be HCV free, is a whole new world for us who seem to be cured and a whole new journey before us.
Cally

[moma]

The Doc himself called today to tell me my test came back UNDETECTED! I was on Harvoni for 12 weeks and my last pill was April 14th! I've had this monster for 44 yrs. I don't remember life without it. Three months off and my only complaint still is tiredness. I have been itchy for years and can't believe I don't wake myself up wanting to jump out of skin now. Can this hepc really be gone for ever? I still don't believe this is going to last. If it's too good to be true then it probably is! Okay another side effect- being negative. Guess after all these years and other horrific treatments it just doesn't compute. Not sharing this body with the hepc virus, feels unnatural, weird huh? Lost in this new body, learning new ways of listening to what it wants. I could go on, but I'm going out and celebrate instead!
You can all get through this, meet you on the other side!
MoMa

[Cally Balmoral]

So true .....now we can celebrate in our new bodies and rejoice.  That's what I really want to tell people.....just like you and me....there's a whole new world out there.  No more itching..isn't that great.  I'm so happy for you!!

Cally

[Phil]

Many of us have lived with hepatitis C for so long we have forgotten what normal was like. I haven't noticed many folks who have described suddenly feeling great post treatment. More seem to experience a slow and protracted recovery. Probably as it should be, although we have little in the way of evidence to understand the process. Wholesale cure from chronic viral infections is a new phenomenon in human experience.

For many of us, the hepatitis C virus no doubt caused damage to multiple organ systems for many years. Even if that damage was in part subtle. Just adjusting to the absence of that chronic, generalized inflammatory state which is hepatitis C infection, would seem a slow process. An equilibration involving many of the body's organ systems, particularly the immunologic system. In general the immunologic system is slow to recover from chronic stressors. For example the prolonged recovery time of the adrenal glands after chronic steroid use.

What I'm saying is a protracted recovery is likely to be expected. I'm also saying we are the first group of any reasonable size to experience this process of cure and recovery from chronic viral infections. This is essentially unchartered territory, medically speaking. For that reason, and because we have the technology to easily share experiences, doing so is of value. Trying as best we can to account for factors of other medical conditions and age.

As background I have had hepatitis C, genotype 1a, since 1988. I completed 12 weeks of treatment with Harvoni, 9 weeks ago. I had no prior history of treatment for hep c. Viral load has been "undetected" since early in treatment. In 3 weeks I will undergo my 12 week EOT testing. In 2008 my liver was stage 2 by biopsy. Just before treatment, 6 months ago, my liver was stage 4/cirrhosis by Fibrosure testing. Fibrosure is a questionable test at best. In my opinion.

Phil

[Cally Balmoral]

Phil......so true.  We are the first and our experiences will help those who finish after us. Glad that you are doing so well.
Cally

[Phil]

So how are you doing Bally?

Phil

[Cally Balmoral]

Hi....actually it's Cally, but I wrote Bally a couple of times, oops.  I'm doing well after getting through all the post Harvoni symptoms.I am in a wheelchair because of all the steroids I took before and after my liver transplant.  I also had cryoglobulinemia a side affect of HCV. Those wounds have healed and I have no more pain there.  Am able to get outside by myself now....so that is a great blessing. I have to remember too that I am 40 years older now than I was before HCV.  All in all it's such a blessing to be undetected.

Cally

[Phil]

Cally,
Sounds like you have had a rough time. Wheelchair because of the hips? Avascular necrosis? Now also called osteonecrosis. Steroid use is a classic association although we are starting to understand that hepatitis C itself may be a cause. I had avascular necrosis in both hips and shoulders. Surgery for all four. Never used steroids and had no other risk factors. Not asking for personal medical information you don't care to discuss. It's just that our understanding of extra-hepatic manifestations of chronic hepatitis C disease is evolving. That understanding is very different than 8 years ago when I first reviewed the literature. Even so we still don't know much. Glad to hear you are virus free. Hope you feel better soon. I'm gradually feeling improved.

Phil