Aa
Aa
A
A
A
Close
Avatar universal

Stopping at week 36

Hi, I can't do it any more. 24 weeks of Pegasys and Ribavirin and Gilead GS5885 and Gilead 9451. Didn't UND until week 6 which according to the trial protocols means I must continue Pegasys and Ribavirin for another 24 weeks. Now at Week 36. Still UND, but have spent the last two weeks vomiting and nauseous all the time. I can't go to work, can't do my research and write my book and the sx have been getting worse. Tried Maxolon and Zofran. No effect and just made me really sleepy or gave me blinding headaches. last night at 2 am I retching blood into the toilet and at that point I decided, enough. No more. I'm out. maybe with UND since W6, the TT allele, and the Gilead drugs, I'll stay UND, but if not, that's. Just the way life goes. I don't have serious fibrosis and I need now to get healthy again, get back to my career. thoughts?
38 Responses
Sort by: Helpful Oldest Newest
Avatar universal
You have little to no fibrosis, your Hepatologist says to quit, there are easier and better drugs coming.
You are not naive and I trust that you will make the right decision for yourself.
No matter what, we are with you.
Helpful - 0
766573 tn?1365166466
Wow your Hepa said the treatment is slowly killing you? How slow does he mean? What does he mean? Does he mean long-term effects or how you are feeling right now? I sure wish there were a way you could stick with treatment but I suppose you might very well remain UND. I hope you do after all this.

You still could have an incredible exciting life. I am sorry things have gotten so dire. You must have been really making yourself stick with this for some time now.

I am glad you can work through the reasons why you decide to stop with us as it helps you think through things. No one around me really understands HCV or the meds so I would be making a decision like this in a vacuum if it weren't for the people here on the forum. I hope you feel that way too ~ supported I mean.

I know just what you mean about Peg &/or Riba. I think a lot of us do. I hope you continue to post and let us know how this works out and how you are healing.
Helpful - 0
163305 tn?1333668571
If your hepatologist says to quit, then quit it is.
Mine does whatever he can to keep patients on tx. If he told me to quit, I'd do it.
You may stay undetected. And the treatment could have helped your liver.

Do let us know how it all turns out.

Wishing you the best of luck
OH
Helpful - 0
Avatar universal
..... And, as always, you've all been lovely to me
Helpful - 0
Avatar universal
You should always follow the advice of a knowledgeable Hepa.

Good luck
Will
Helpful - 0
Avatar universal
I've tried everything and so has my medical team. Reducing Ribavirin made no difference. I vomit blood because all the vomiting over the past two weeks has put so much stress on the blood supply in my esophagus, they explode easily now. You talk about imperatives to continue treatment. Fair enough. There are also imperatives to live in a way that allows me to take care of my responsibilities and to take some enjoyment from the moment rather than always deferring life until I reach SVR. At the moment, however, and I quote my hepatologist who is also a virologist, the tx is slowly killing you. He doesn't think it's such a good idea to continue. Nonetheless, I have instructed him to come up with some alternatives to cessation. If he does and if they sound doable, I will do. As for the questions surrounding future tx. I will not do interferon and Ribavirin protocol again. Not happening. Nobody knows if the GS trial drugs I took militate using other pi drugs in the future, and GS7977 (is that the right Gilead drug, the one they got from Pharmasett?) is reputed to not have that limitation. Nobody knows either how UND, SVR and futility rules play out with the particular combination of med I took. And in the end, I am nearly 62 years old. I have had an incredible, wonderful, exciting life, and thus face its end without a single regret or note of rue. This tx has already been extraordinarily difficult and I'm just not too interested in living through 3 more months of even more difficulty, not being able to pay my bills, using up my savings, disappointing my students and my editor, and being quite unable to do jack **** Its a judgement call, and not an easy one.
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.