New info on Telaprevir

Just met with my new hep doc at Mayo who is very familiar with the new drugs coming out late may.  He suggests I do 4 weeks of telaprevir and if undetected at 4 weeks continue, if not stop.  I like this idea.  Mutations are not a concern if I stop at 4 weeks.  He again said he wouldn't have stopped my tx at 12 weeks with standard of care when my viral load was 348.  But would have continued and if undetected by 24 weeks would have extended me to 72 weeks.  Easy for him to say.  If there weren't these new drugs on the horizon maybe, but that's not the case.  He thinks I would have been a relapser.  Just some new info for those.  The rash is a pretty big deal with Telaprevir.  No relationship between having a rash from riba and having a rash on Telaprevir.  Also if I'm interferon sensitive or resistant I have a 50% chance of SVR.  Which may be why I was detected at 12 weeks.  I could do Boc and know at 4 weeks in with interferon if that is my issue.  Back and forth we went, boc vs tele.  In the end he rec the telaprevir.  I really need to pump myself for doing this again.  I've so enjoying my life lately and am scared to do this again.  But the appt sort of pumped me up.  He couldn't say my virus will continue to be slow acting.  Anyway I received so much information so fast there is no way I can process it all.  There is so much stuff coming out after these new drugs it's amazing.  So, if unsuccessful this next time, I can wait and treat another day.  

[RobertBeWell]

He'd have you quit at 4 weeks if not UND?

Well, he's the pro, but it sure sounds like "giving up without a fight" to me. Mutations are going to be an issue with ANY of the DAA's. Always and forever. That's why the research focus is on using several different DAA's in combination - just like the do with HIV - because as you add drugs that affect different locations on the virus, the chances get smaller and smaller that a resistant strain can emerge.

Sure sounds like a fishy plan to me.

[spectda]

Robert
I think judy forgot to mention that she does not want to treat longer then 24 (telaprevir) or 28 (boceprevir). Therefore the docs suggestion that she stop at 4 weeks if not und.

Judy
If you were going to use boceprevir there is a lead in so I assume you realize that the normal 4 week rvr in the boceprevir world becomes 8, thats what they call rvr in their trials and what they use to determine if 28 weeks total tx should be enough. You already have a good idea of your response to interferon because you treated not long ago.

I know that you don't want to treat longer, but if it was me I would want to do the whole 48 if my body would comply especially if I had a slow response to soc. That being said no one else can determine what another person can tolerate. You know what's acceptable to you and your doctor is working with you which is great.

Don't worry judy, your gonna get through this and put this behind you.
-Dave

[Trish77]

The other thing you might want to do....if it's affordable and feasible...is get a PCR once a week when you start so that you know within a week of when you went RVR if you manage it by 4 weeks - or at the 2 week mark if not every week.  That will be valuable information also when considering a 24 or 48 week approach.  Perhaps a bit of a different approach but one I would personally take if I could, with so much riding on an RVR with regards to length of treatment.  

[spectda]

It seems like a perfect solution that you and your doc have come up with since you want to keep tx time to 24-28 weeks. Since your liver damage is minimal and you were on the fence about treating with tela or boce vs the next round of DAAs it all makes great sense.
-Dave  

[miked]

As a geno 1b I failed my first tx in 2004 with a viral breakthrough at week 36 (never went UND just a slow decline to 9600 then rose to 15000).

In 2008 I was in the PROVE 3 trial which was still pretty early in the Teleprevir (VX950) game.  The trial arm I was in had me on VX950, INF and RBV for 12 weeks followed by 12 more weeks of INF + RBV.  After the trial I found out that between week 1 and 2 I went negative and remain that way.

Sx for the PROVE 3 trial still sucked because of INF and RBV, but I only had to put up with them for half the time of SOC.  Around week 4-5 I got the Vertex rash from hell that was bad until we managed it with steroid cream.

I'm glad I treated a 2nd time with Telaprevir.  My life is back to normal and I look back at tx years as a bump in the road.

Good luck with your decision.

miked

[dointime]

I was on the Vertex Prove2 trial.  I was UND at day 15 and my viral load climbed back up again after that (ie. breakthrough).  So I had mutations which started to multiply at 15 days.  I would challenge this doc's claim that mutations are not a concern if stopping at 4 weeks.

dointime