Really need Info

[pln]

Let me recap real quick, my study dose not alowe rescuse meds untill we stop vx at the end of week 12, Sunday is the end for me. Monday I go to study nurse for blood and more meds, I know I am not in group D which stops all meds at week 12, so I either have 12 more weeks of meds or 24 more weeks. My riba started at 1200mg cut in half at week 3 for low hbg, so I think I should start procrit so I can go back up on my riba for my remaining time. Who knows I may be on placebo!! and vx has no track record let! I need to do what is best for me and my health. Now my problem my DR will not give me procrit, told me I do not need it my hbg is 9.5, but I feel o.k. I showed Jim a paper (study) my DR wrote that said after you become und lowering riba will not hurt chances for svr, I hope you remember that paper Jim. Shoud I demaned procrit?? or should I just keep going like I am?? I KNOW vertex and all of our study nurse's read this site , My nurse, PDS nurse and MRE, Dr all got a letter about this site and the vx lab rats that post, I have been a good patinet, But should I put my foot down now?? I tried to get a pcr at week 4, was told no, so I had one done at week 11, I know that will not tell me placebo or soc BUT I did not want to go to week 20 and not know,sorry jen,  I will find out my pcr today. What would you do. Thanks Pam

[Mister beagle bailey]

If she was allowed procrit after 12 in the trial, then i would go to a hemo (blood) dr and get the procrit from there.  There are many docs that don't believe in recue drugs, why I have no idea as it helped me and others here on the forum.

Beagle

[jmjm530]

After reflecting some, the fact that someone at Dr. Shiffman's level is involved has to be factored in. He's well respected and authored numerous articles on riba, SVR and epo intervention.

Maybe a good first step is simply to sit down with him and go over everything slowly. Ask him about why he thinks you're non-detectible. Ask about what study data he's basing his position on. Ask him about what harm he sees in giving your Procrit, i.e., the risks and the rewards. See what he has to say.

You might also ask him when he will have your 12-week VL load data. If it's not very soon, maybe you can be tested outside of the trial if allowed. I believe one member said it was allowed, not sure.

Part of the problem as I see it is what is done is done. Your riba was reduced early per study protocol and nothing can be done to change that. How much that will impact SVR is really unknown, especially because you don't know for sure when you were non-detecitble, you don't know if you're taking VX-950 or not, and you're not sure how relevant the data Shiffman is using to make his decisions on. Indeed, he may be correct and you will be just fine. Let's hope for that.

A second opinion can always be useful, but personally I'd think twice about leaving Shiffman unless I hooked up with someone at his level first. Assuming of course, that other than this issue, you've been satisfied how he and his staff have managed your treatment.

Hopefully, everything's going to work out just fine. Take whatever steps you feel necessary but try not to stress to much over it. For all we know, you are non-detectible, are taking VX-950 and don't need any riba.

Be well,

-- Jim

[cuteus]

I hope you find the resolution you are seeking and the one that is best for YOU.  although we don't know how vx factors into the equation, and maybe because of that, the proven dose of riba should be continued through tx. We have a member here who became undetect early, before wk 12, continued on full doses until wk 52, at that time switch to half peg and no riba till the end of wk 88.  he relapsed.  Being negative early does not necessarily mean that you will not relapse, especially if the doses are lowered, even late in tx.  I asked my hepatologist, Dr Bernstein, if I could just take the peg and not the riba after the 48 wks, up to the 72 wks planned and he said NO, full dose for the whole 72 wks or nothing.  That should tell you something.  We don't know how vx helped, you got to make sure, everything possible has been done to try and get that SVR.
good luck

[NYgirl]

It's not necessarily JUST the three but saying that I mean Jacobson, Afdahl and the few others who are "the" world reknown experts.  THE hep guys.

Because the paper contradicted exactly what the big guys have to say (and face it - they are "the" guys when it comes to the LATEST Most UPTODATE information) I wouldn't take it with much credibility, especially since Jacobson is involved in SO MANY of the "studies" done as lead investigator.

I'd take their word for it as I know that when they say things they are proof positive FACTUAL and have been investigated and documented thoroughly in MAJOR studies (ie: Berg, HALT-C for example) - compared to Dr. JimmyJo Flatbush of Johnson Creek if you know what I mean.

It's just that I've never heard ANY doctor who believed that dose reducing (especially in the first 12 weeks when it's been proved we need to hit it hard and fast (double espcially the first FOUR) was anything but to be avoided at all cost and last resort.

Hope that helps explain what I meant.

[NYgirl]

PS One of the first and most important Dr. Jacobson (who I went to for a second opinion but it NOT my primary hep doc (I can't afford him truthfully) questions was "did you dose reduce at all during treatment" to which I told him no in fact I took too MUCH of the meds it turned out.  He said GOOD that is crucial.

I did not dose reduce until week 46 when HE reduced my Riba by 200 (i was taking extra during the entire course up until then my a stupid choice and it REALLY caused me serious problems with my hemo - but once I had started it I was worried to reduce so i just suffered through).  So even when I did finally reduce, I was still OVER where I should have been taking the riba in weight based by a good deal.

[rochammer]

This is a study for 950 so I would guess that they are checking the blood levels of the 950 , riba & peg. The old rule of SOC may not apply no one knows that is what a study is for. Theses are top doc