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Hep C relapse again

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Posted 8/15/2011 5:25 PM (GMT 0)
I am new to this forum. I read the postings but never signed up unti now. 

I appreciate how kind the people here are in responding to requests for support.

I respect the knowledge and experience I've observed here. I'll just jump in :-)

I was diagnosed with Hep C in 2001. I did 48 weeks of PEG combo in 2005. I was clear of the virus 6 weeks into treatment.  I had ALL the usual side effects including low red & white cells & platelets, going on Nuepogen & Procrit, anti-depressants and sleeping pills and even Ritalin during treatment. I barely crossed the finish line, but I made it! 6 months later I relapsed. I am a 1a & had a viral load of about 10M. After relapse my viral load jumped to 60M, the virus returned with virulence & increased strength. It took 5 years to semi-recover from treatment. I still suffer peripheral neropathy, fatigue & depression.   I have an excellent healthy lifestyle, am vegetarian, and never drank or smoked. I consider myself a strong person.  I got Hep C experimenting with drugs in college. My liver is a high stage 3. I did treatment to prevent stage 4.      

I have recently completed 24 weeks of Telepravir. I was told I had an 80% chance to SVR. 6 weeks after completing treatment I relapsed again! Viral load now 50M.

I am beside myself with disbelief. The treatment was no easier than PEG interms of side effects, maybe worse. Of course I get to go through all the recovery from treatment I did before. My Hepatologist wants me to repeat the treatment! WHAT???

I am looking for any kind of hope out there I can find regarding Hep C treatment. Has anyone successfuly SVR'ed on telepravir? Is this new triple combo treatment as full of drug company hype and manipulated science as PEG combo?  I would love to hear from someone who actually SVR'ed, not a Dr. or drug study!  

Sorry for the long post, I feel duped and am reeling emotionally. I am devastated.  

Carrie

 

Posted 8/15/2011 5:44 PM (GMT 0)
Carrie-
I am so sorry that you are suffering with the hep c. I am sure one of the moderators will be along shortly to welcome you and offer information.
In the meantime, welcome to healing well. As you already know, this is a group of supportive, caring people.
Emma
Posted 8/15/2011 5:56 PM (GMT 0)
Carrie,
I did 48 weeks of interferon/ribavirin in 2004, was clear for 3 months and then had a cerebral hemorrhage. My Hep C was back, and my liver went to hell in a very short time. Almost 5 years later, I had a transplant. A year after that (last fall) the virus was back, so I'm 10 months into another treatment of the combo. So far, my viral load has been negative for the past 2 months. They are giving you the combo again to hold off more damage to your liver. As long as the therapy is working, your liver is escaping more scarring from the disease. I think if you asked your doctors, they'd say that there are two choices: do the therapy, or allow your liver to fail from cirrhosis and not having done anything.
Posted 8/15/2011 6:43 PM (GMT 0)
Hello, Relapsedagain/Carrie, and welcome to the forum. We are happy to have you as a member. I can feel your disappointment about relapsing after a course of Telaprevir (Incivek.) It really has proven to have a much greater SVR than the combo. I was looking forward to trying it myself, but shortly before it became available I was found to have a hepatocellular carcinoma (liver cancer) for the 2nd time. I am currently on "the list" for a new liver. As far as I know, there are only 2 other people here who have been on Telaprevir or Boceprevir (Victrelis.) One was in a study and the other hasn't posted since initial posts.

I believe David is correct. You have the choice to try treatment again (either the combo or Incivek) or do nothing and end up needing a transplant...with no guarantee that you'll get one. Liver disease is such an individual thing that experiences vary greatly from person to person. I will say you are ahead of the game with a healthy lifestyle. That will buy you time, if nothing else.

Hugs,
Connie
Posted 8/15/2011 7:34 PM (GMT 0)
Thanks for the support folks!

I know the Telapravir SVR rate is better than the combo in trials. I'll give it awhile, wait & see for myself & decide what to do next. I'm not convinced its any more effective. The combo had good initial SVR results when it first was approved too.

David, you're back on the combo? Why not Telapravir? How are you feeling?

Carrie
Posted 8/15/2011 7:53 PM (GMT 0)
I started back on the combo, because at the time, teleprevir (Incivek) was not approved. When it first was, it hadn't been tested on transplant patients. Now, they're testing it with transplants. If I had to do it again, then I'd do the 3 part therapy. I've been fatigued and achy for the past month or two, but the nurse practitioner I spoke to thinks it could be something else. I'm having a ultrasound in the next couple of days to see exactly what's doing. According to the nurse practitioner, my viral load has been negative for the past 2 months.
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