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Avatar universal


I just started treatment 1 week ago, no anemia side effects yet. I am in the SCH trial which means no recue drugs. I have read the post on here, it looks like most suffer some type of anemia, yet the information I get from HCVadvocate is only around 25% get anemia. I am worried because I am on a 1200 mg Riba dose. Does anyone know the real statistics and How long before the anemia sets in? So far I have been able to exercise and no shortness of breathe yet
4 Responses
183955 tn?1296407045
I think you have your information wrong, I am also on the SCH 503034 trial, and you can use rescue drugs, but they will not pay for it through the trial.
You would have to use your own insurance for the drugs.

Here's what the Consent form states for the 2 drugs that it will not pay for...

"There are medications available that may or may not be helpful in treating low white blood cell counts in patients taking PegIntron. Your physician might want to use one if he/she thinks it could benefit you. The study will not provide or pay for this medication."

"There is a medication that is available that may be helpful in treating anemia in patients taking Ribavirin. Your physician might want to use it if he/she thinks it could benefit you. The study will not provide or pay for this medication."

As far as any other drugs the study will pay for them. That's what I was told when I signed the consent form.

I have been reading on here for months, and did introduce myself a while back, but haven't posted...

Asked for a blood test in 1999, when a friend who had a transfusion around the same time I did was diagnosed with Hep C, thought I should be tested too...
Was tested, and the test was never read by the doctor until August 2006 when another hep c blood test was done because of a high ALT level

was diagnosed August 2006

I am genotype 1b
August 2006 1,131,000
November 2006 2,640,000
March 27 (Drug start date) 6,130,000
Biopsy Feb 2007
Stage 3/4
Fibrous expansion of portal tracts with bridging fibrosis and architectural distortion with nodule formation
Portal Inflamation Grade 3/4 Moderate portal
Lobular  Inflamation Grade 2/4

I am in Arm 1 of the SCH 503034 trial
Arm 1 is the control arm, meaning I am only getting standard care right now.
My 2nd week blood test I had a 1 log drop, I'm now at 500,000.
If after 24 weeks the levels are non detectable I will continue with standard treatment for another 24 weeks
If the levels are detectable I will be offered the trial drug with the peg and the riba for 24 weeks. Total treatment may be up to 54 weeks depending on the time it takes to get the virology results from treatment week 24 visit.

Monday I took my 5th shot...the sides are bearable, but that could be because I do not work, and am able to lay in bed most of the day...lol

My appetite was supressed for the first 2 weeks and all food tasted like poison...too bad that didn't last, I could have used loosing a few pounds, being I've been on WW since September....lol

Well, time for a nap...will check back later....

I'm here and am ready for battle!!!
Avatar universal
Compto, with what Angel just posted, I would be sure and ask if you can get those drugs (procrit / neupogen)   if your hemoglobin gets too low.   If you can, (and if you have insurance or if you don't and get it on your own)  ask if your treating doctor (your hep doc)  will prescribe it or if you will have to go through a hematologist to get it.  

I think it varies on the drops  (some are OK and don't get too anemic throughout treatment and do OK and don't have to use Procrit while others get anemic and need interventions like procrit and/or reduction of dose.)  If you don't know yet how they will treat the blood disorders (anemia and neutropenia)  ask them.  Ask them what they consider "anemic" (ask how low they will let your hemoglobin get before they consider you "anemia")  and ask about your ANC (absolute neutrophil count)  and ask what they do to treat you if your ANC gets real low  (find out what they consider "real low")

Best of luck to you.  

Angel - that was great help and info you gave.     Glad to see you are back posting.  Best of luck to you on the SCH trial.   Keep us updated on how you're doing, OK?    Rest easy.  
Avatar universal
Thanks for the answer, I just followed up, My Doc does not believe in rescue drugs, he thinks they cause more harm than good, He said if I get anemic he will lower my Riba dose. I am in the 28 week arm of all three drugs. Hopefully if I get anemic it will be after I have gone UND
Avatar universal
I don't know about anyone else..But I'm on 1200 riba,180 mcg int...and I went anemic by 10 weeks....My doc actually said they like to keep me just above 10 on hgb.....I went 9.8....8.8....then 7.4.....The EPOetin for 6 weeks....LOL..But I got UND BY 10 - 11 WEEKS.....<50
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