posting results / vx950

[web52]

hi. first i want to thank all of you. although i havent posted i've received lots of support just from reading all the posts over the past 2 mos. wish i would have known about this site when i started tx this past august (when i started the vx trial). im 54, male, type 1a. orig dx around 1982 when this was called "non a non b hepatitis".  dont remember #s, but docs always told me i dont need tx at my stage (last biopsy showed stage 1 w/ minimal inflamation (inflammation). guess the thinking on when to tx has changed, so last spring i was told by my gastro to treat. went for 2nd opinion to ask about vx, which i read about at webmd. just so happened they were starting to enroll for vx study & i met criteria. im in the grp that goes 48 wks w/ riba & int & got vx for 12 wks. have had lots of sides (like many) but it has been working so far, just got my printed lab results (i will take shot 27 tomorrow): day 1 pre dose vl = 2,300,000; dfay 4 = 492, day 8= 253, day 15 = 29 (still waiting for doc to clarify the 29), day 22 = <30 & it;'s been "undetectable" since. chem as of 12/29 were normal range. wbc (1.81) & hgb (11.1) a bit lo but my body seems to be hanging in despite the sides. just wanted to share the info, as i know many are looking forward to hearing how this new drug  does. thanks again to all who post, it has helped me enormously.    

[ChrisDDD]

Yes.  Thank you for posting your results and side effects, though minimal?  I am hoping to get into the VX-950 trial for non-responders, so I keep a close watch on those posts, as well as offering what help I can to people on other treatment regimens.  Congratulations on having cleared at this point!

[chcnme]

Hi Web.  It's great to meet you  (always great to see someone who is doing the trial and who is willing to share their experience.)  Thank you very much for posting the results.  Way to go! I come by here mostly to check on VX posts :)  I'm interested in VX (as so many are), and there are some great folks here who know a lot about it because - like you - they are in the trial, and they've been willing to share so much of their knowledge.  I thank all of them, too - each and every one of them.  Keep hanging in there.  Thanks again for posting.  

[web52]

thanks & good luck to you; hope you get into a trial. sx were pretty bad the first 4 months (i think it took a month for the vx sides to diminish, inc rash). theyre now mostly "very uncomfortable" but i cant complain after hearing what some folks here went / are going through. hang tough!

[mremeet]

Howdy web, welcome aboard, always good to have another VX-er to swap stories with. Sounds like you're doing pretty well, great viral response. Chances are you're on your way to SVRsville. And you say you had a VX rash? How do you know it was caused by VX? How bad did it get? Any other interesting details to share?

[jmjm530]

To simplify, "29" means you still had some virus present in the range of 10-30 IU/ml as that particular test does not give an exact number. Your day 22 "<30" means you are non-detectible down to the limit of the qualitative test which is 10 IU/ml. So congratulations!

-- Jim

[jmjm530]

I think most of us who are in or have been following the Vertex trials here, are clear what "29" means. In case, you missed some of the discussions, "29" means you are detectible between 10 and 30 IU/ml.

What has been puzzling me a little is why so many of the trial folks seem to have at least one "29". For example, Heptimax is a two part test -- PCR and TMA -- yet it seems very infrequent that someone posts they were negative with the PCR (goes down to 50 IU/ml) yet postive with the TMA. Actually, I was once, but really can't remember too many others. Usually they're either positive with the PCR or negative with both.

Where I come out is that these low level of virus will show up if we test early and frequent enough. Vertex starts testing weekly from week 1, as I did. Most do not and therefore never see that low level of virus. Either that, or some difference in the tests being used. OR maybe something unique in the way Vertex plus SOC kills the virus as opposed to how it works with SOC alone. I'm sure this will be discussed professionally when final data is analyzed.

-- Jim