I was in the no-riba arm of the Prove2 trial so I know the rash was not from riba.
Susan - the somebody else I was thinking about was in the same group as me at the hospital. But as you say, you are another one in a no-riba group who got the rash way earlier than this doc says.
pcds - wishing you all the best with your tx. Fingers crossed you won't get the rash and if you do that it can be controlled. You might want to line up a dermatologist just in case. I believe that most people don't get the very severe type and can make it through.
dointime
I had a rash with riba, week 2. The telaprevir rash is different I assume. Rash is common with riba and those who have done telaprevir had the riba also. So how do you know which is causing the rash? The rash I had while in tx was difficult but not a show stopper. To Dave, my HGB was in the high 9s at 12 weeks as I recall. This doc at Mayo was and still is the hep c trial guy. Mayo in AZ has hundreds of trails. I went to this guy just because of his experience with the new medications. I will see him again in June (27) with labs and the auth etc to start treatment. I certainly will ask about switching to boc if problems with tela. Something tells me that won't be recommended.
Unless I see new info I am going to go with Tele. Both seem to have about equal chance of success but if that Tx fails, it looks like all the PI resistant virus is gone within 2 or 3 years for 90 per cent of of the Tele treated patients.
Patients treated with Boce still have resistant virus at that point. Check out the recent EASL conference for the studies.
I hope to clear but as a previous non responder to SOC I know my chances are about 40 per cent.
I am thinking about doing the first 7 shots 5 days apart rather than 7days and starting the PI after the second shot. I am figuring that there would be a reduction in Vl and less chance of resistant virus.
I was in Prove 3. Got the group C..., Pegasys + Telaprevir. MY RASH started at week 2, not week 6. Maybe, dointime, you were thinking about me? Susan400
I don't know where this business comes from about not developing mutations if tela is stopped at 4 weeks. I was in the Prove2 trial and was UND at day 15. After that I had a breakthrough which was the mutations being selected out. So I probably had a 100% mutated viral population by week 4.
Next thing. My rash started at week 2. There was another one in my trial who's rash started at week 1. It sure does not sound like it to me that this doc has done the trials.
dointime
sounds like a plan. You might want to ask your Dr. about (1) doing the 4w lead-in even if you opt for tela (2) switching to boce if the rash drives you out of your mind.
If I was adding the PI at the start of tx I would definitely want to know my ifn-only response at w4 since it's such a critical factor in triple tx success. Vertex has downplayed usefulness of the lead-in but I suspect that may be a marketing gimmick to allow them to tout an overall shorter tx. Their own trial showed an 83 to 88 improvement among relapsers with the lead in.
Judy..
Nothing much to add to what your desicion should be...looking at all this very carefully also. for next year. Something tells me there is going to be a whole lot of posts just like yours in the next few months.
Good luck with what you decide and future tx.
Will
My hepatologist and I had the same convo -- it is a tough decision, to be sure.
For me, I had rash issues and anemia issues last go-round. The deciding factor for me was the statement my doc made that "it's easier to treat the anemia than it is to treat the rash."
I want to minimize the chances of having to discontinue tx in the middle, so I am going with boc.
Good luck!
Do your hgb results from start to the end of the 12 weeks that you treated?
meant to say
Do you have your hgb results from start of tx to the end of the 12 weeks from your previous attempt?
Hi
Do your hgb results from start to the end of the 12 weeks that you treated? That would help. It seems that if your hgb dropped too drastically your doctor would no have considered boceprevir at all. I would assume he has reviewed your previous tx lab work.
If you have had both skin reaction and your hgb fell below 10 g/dl within the first 4-6 weeks It would be a tough choice. You could always wait for something else to treat that may be a more powerful combination and not have either of the side effects of tela or boce.
If by chance you decided to use boce would you decide to stop at 8 weeks rather then 4 since at four you would not have had boce yet?
Good to hear from you,
-Dave