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Avatar universal

introduce myself and Viramidine study

Hi folks - I never really introduced myself here, and I wanted to now. I am 48 y.o. female, I have been diagnosed HCV over 20 yrs now, current biopsy shows portal fibrosis Knobell stage 1/4, portal inflammation 3. Viral load 2.9 mil genotype 1a. I have been told this is very slowly progressing and treatment was optional.  A trial study came up last Oct to study Virmidine over Ribavirin with Pegylated interfern (Pegasus). Researchers believe that Viramidine will not cause the severity of anemia that Ribavirin can. I started the study Dec 03 (it is blinded and I don't know if I am on Ribavirin or Viramidine). One of the reasons I started was because I don't have health insurance (got laid off and couldn't afford Cobra), and of course, now I can't get health insurance because of Hep c - wonderful country we live in - isn't it?
So far, I have had all the sides veeryone else has, but my HGB has stayed up there, it is now 11.9, baseline it was 14.5. I am fatigued, but am functioning.  My Neutrophils are jumping up and down (they are upset!!). I posted that here awhile back, but haven't dipped dangerously yet. So, I would like to assume that I am on Viramidine, and that it will be the next best thing for us.  I also think that this dose could be increased to give us a better chance to clear.
They will not tell us our viral load until 24 weeks into the study (end of May for me), they tell me it might a little longer to clear in the beginning).  But I will keep you all informed.  I think this is a tiny step towards a tx that clobbers your system a little bit less...
sammy
7 Responses
Avatar universal
Thank you for the introduction and the Viramidine information.  I think a lot of us non-treaters are watching the Viramidine developments very closely. My doctor thinks it will be the next big advancement in HCV treatment.  I'll look forward to your updates.  Best wishes to you!

Susan
Avatar universal
interesting stuff, sammy -- a little mystery always spices up tx ;-)

if you were to develop neutropenia or severe hemolytic anemia, will the study allow you to take neupogen or procrit (or equivalents) or will they reduce dose?   someone posted here a few weeks ago about a study he/she was in that didn't allow these types of boosters, in order to conform to the study guidelines.

do you have any other hints that you might be on the new drug instead of ribavirin, other than the absence of significant anemia?

good luck,

stan
Avatar universal
Stan - no they will not give us neupogen or procrit, they will dose reduce us - real drawback of the study!!!
Another drawback is that those of us who are are on Ribavirin and are non-responders, we will not be told until 24 weeks.  Everything I have read tells me that if at 12 weeks, you don't have the 2 log drop, you are a non-responder.  My doc told me flat out that if I am a non-responder at 12 weeks, I should drop out of tx. Unless you have liver damage, and need to slow progress. So these ono-responder/Ribavirin folks will be going an extra 12 weeks of tx for nothing, I think.. opinions anyone?  
I don't have anything else to go on to suggest to me I am on the Viramidine.... won't know until 48wks when study is over....
take care
sammy
Avatar universal
I think your experience in this trial is very interesting. Thanks for sharing & hope you will keep us posted.
Avatar universal
Regarding "responders", it is not quite so clear cut as it seems.  It took me 33 weeks to clear the virus (PCR <5), but because the vl moved steadily downward, my doc kept me on the meds, and I will treat for a total of 84 weeks (1 year past clear date).  People like myself are often referred to as slow responders.

Thanks for the info on Viramidine.  Anemia has certainly been a constant thorn in my sx.  Nice to know there's something new on the horizon.  Hope whichever drug you're getting works for you.

dA
Avatar universal
I still had detected VL at 12 wks into tx. My initial VL was only 374,000, butwas slow in clearing it, go figure. People with millions clear faster than I did! My log drop was about 1.89, not EXACTLY a two log drop, but pretty close. I wonder if I would have been dropped from that study.  I chose to go longer than 48 wks and just had the blood draw for the 3 mo post tx test.  I am with don Al, we are slow responders, not non-responders, but what can you do with these standards they set for us? I hope you are one of the lucky SVRs!
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