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Incivek discontinuation guidelines changed?

Incivek discontinuation guidelines changed?

Just finishing week 12 of triple with Incivek, had 12 week PCR drawn today.  Began treatment with 1 million plus viral count, 444 at 2 weeks, 179 at 4 weeks, 77 at 8 weeks.   When I went to the hepatologist last month I was told that as long as I was below 1000 at week 4 and week 12, I could continue treatment to at least week 24 at which time I would have to be undetectable to continue and finish.  Today I had my monthly appt and am now being told that I have to be undetectable at week 12 to continue.  So if todays PCR does not show me as UND I am done.  I am a little pissed mostly because I went in today prepared to tell them it's time to up the game and my meds and get me to UND by week 24...meds were reduced due to platelets dropping to 19.  Everything I have found says <1000 at week 4 and week 12, am I missing something?
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Avatar_m_tn
Don't think your missing anything, i would ask my doctor what he's basing this on......... Slow responders should extend tx.

Summary
To summarize, telaprevir-based therapy begins with a 12-week period of triple therapy with telaprevir plus pegIFN/RBV; no lead-in phase is recommended in the prescribing information. Triple therapy is followed by a period of pegIFN/RBV alone, the duration of which is RGT based on HCV RNA decline at Week 4 of triple therapy. PegIFN/RBV alone is administered either for an additional 12 weeks after completing triple therapy, for a total of 24 weeks (in early responders), or for an additional 36 weeks after completing triple therapy, for a total of 48 weeks (in late responders). Cirrhotic patients may benefit from the full 48-week duration of therapy, even if they meet the standard criteria for shortened therapy. If HCV RNA is ≥ 1000 IU/mL at Week 4 or 12 or detectable at Week 24, all therapy is stopped. Common toxicities include rash, anemia, and anorectal discomfort. Resistance mutations occur in those who fail to achieve SVR with triple therapy.
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Avatar_m_tn
You are correct.  Wk 4 & 12 must be under 1000 IU/ml to continue.  Hopefully and almost sure you will be UND at wk 12 but as long as the viral load is under 1000 guidelines say continue on to week 24 at which time you must be UND.  If not game over.

Do you think your doctor is freaked out about the low platelets and doesn't feel you'll be able to continue?  19 is very low but I've seen people treat with 20's right through 48 weeks and platelets do bounce around.  Talk with your doctor and have him tell you exactly what he basing stopping tx at 12 wks if not UND.
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Avatar_m_tn
Hi there.......:)
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Avatar_m_tn
Holy Cow!
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Avatar_n_tn
My platelets have been in the mid 30's for 3 weeks now!  Although not ideal, doable.  She did freak a little when they hit 19 but with dose reductions, they have bounced back up and remained stable, low, but stable!    I really didn't know what to think when I left her office...however, I will be prepared to challenge her when she calls me Friday with the results.  Everyone just wants to 'think' I will surely be UND at 12 weeks, well there is a possibility I won't be and I will be ready to fight this decision being this close....
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446474_tn?1334111688
As other have said "Today I had my monthly appt and am now being told that I have to be undetectable at week 12 to continue." is not according to protocol.
Is this the same doctor that told you a month ago the correct protocol?
How can that be?
Did you ask them why they are saying something different then a month ago?
What is the reason?

I am surprised they let your platelets get that low. (19,000). But that has been fixed so you are good to go unless you increase interferon again. Watch for any nose bleeds or bleeding after brushing your teeth. It could be a warning sign of too low of a platelet count.

It really doesn't make sense, to me at least. This person is a hepatologist at a transplant center that treats others with the new Hep C meds? Like I said, it doesn't make sense. The protocol has not changes so why did they change their mind. Is their something that they aren't telling you? You are the patient/customer. You and your insurance company is paying for there services. You have every right to understand what they are doing to you. If this is the same person that told you Xifaxan raises platelet counts I would be sure they are experienced enough to know what they are doing.

Good luck!
Hector
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Avatar_n_tn
I'm not sure what's going on Hector, but you can be sure I will get some answers today.  I have always felt good about the transplant center and my doctor.  This doctor is not the same doctor that put me on Xifaxan, however, she has kept me on it.  I had to change doctors this year because the one I have seen since '05 had health issues.
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Avatar_n_tn
I think I stirred up the office a bit this morning!  :)  However, they needed a little shakin up!  Doctor ERROR, she apparently thought I was on Victrelis...that's a concern as well.  There are advantages and disadvantages to the team approach, I do miss the one on one with my old doctor.  One step at a time.  Hopefully I will be UND and on my way to SVR!
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