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Bocep anemia Trial Arm 1 Dose reduction - anybody else out there?
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Bocep anemia Trial Arm 1 Dose reduction - anybody else out there?

Hi, I am new here and I searched the Threads but couldn't find info on how things are going for folks stuck in the Dose Reduction Arm of the Bocep anemia trial.  I was so excited that I went from a VL of 21M on day 1 to UD at wk 6 (w/ only 2 wks of blue pills), but at wk 8 my riba dose was dropped and I still feel so weak,  Has dose reduction alone (without Procrit) raised anyone's RBC?  My treatment coordinator is talking about trying an interferon dose reduction before another riba reduction,  I thought I read somewhere that dosages below 1000mg of riba were completely ineffective for genotype 1?  I know there are some others in this Trial Arm out there somewhere - please talk to me!
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Hi Mountainair,

There is a member in here dealing with similar issues; he’ll likely be in touch soon. Stay tuned for more—

Bill
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I am in week 18 of the epo study and was put into the Procrit arm. I was started at 40,000 units of epo, and after my Hgb just kept dropping to the point that I could barely move it has been increased to 60,000 units weekly. However that didn't seem to be doing the trick so my doctor also reduced my Riba. My Boceprevir dose was reduced due to nausea and vomiting, but both the Boc and the Riba cause hemolytic anemia. My Hgb has come back up from 9.0 to 10.3 with the adjustments and I have been UND since week 8. I'm only on 800 mg of Riba, and I'm GT 1a. Hope that is enough!!

Good luck with tx!
~Pos.
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Avatar_m_tn
Hi-
I am also in the same trial and just completed week 10. I started at 2.65 million, end of week for with soc 79,000. Two weeks later with boce my viral load dropped to 246 but my interferon was reduced 40% because of very low absolute neutrophil count and week 8 I went up slightly to 274. Very disappointing, but there's still a chance. how long have you been on the trial now? You're doing great!

Anyway, my HGB started at 14.8 and at week 8 it was 10.4 so I was not yet randomized although they are expecting this to happen soon. From what I hear on the forum most people are getting randomized to reduced riba unfortunately.

At least you and pos are und, that's the first step. These dose reductions are the drawback of the trial as we've discovered. But hey, you went from 21m to und!

Take Care,
Dave
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Avatar_m_tn
Sorry about the spelling hope you understood, for = four and whatever other idiotic crud I may have written.
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Avatar_f_tn
when do you get your next VL?
Judy
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Avatar_m_tn
Hi Judy-
My blood draw is tuesday this week (sometimes it's monday), treatment week end is today. it usually takes 7-11 days to get results. I wish I could get them as quickly as you did, it really tough waiting that long. I gotta work on patience mode!

- Dave
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Avatar_f_tn
Maybe bec my labs are done in hospital lab dept.  The wait is hard during these critical times.  Are you doing 48 weeks?
Judy
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On the Telaprevir trials they reduced riba and did not give Procrit and had great results anyway. It is thought that anemia is a sign you're absorbing enough riba, so I wouldn't worry too much about it being reduced, especially not after you're already UND.  Best of luck to you!
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Avatar_m_tn
It's true you had a streamlined situation with the lab. In a study everything goes through several hands before it get's back to you. Plus the blood is shipped to the lab.

If I get to und by week 12 then I will be in the study for 48 weeks, if not the trial is over and I will very likely continue privately. I am of course hoping to remain in the trial.

- Dave
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Avatar_m_tn
I think writeitdown is correct, as early as both of you went und, you have about 90-95 percent chance of svr from the stats I read. Your gonna do it!
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Avatar_n_tn
Hi mountaineer,  As i am still learning how to navigate this site i may be redundant in my replies.  But i just want to make sure you get my reply.  First of all congratulations on
being UND!!  Great start!

I was randomized at week 11 to Arm 1.  I wasn't as concerned as i had lost 20lbs (from the meds) and with the reduction (1000 to 800mg/day) i was at the dose i should be according to weight.  I am at week 20 and still UND and i hope i will not have to be reduced again.  The trial doc did agree with me about the new dose matching my weight but at the same time he said that if my hgb would go up considerably  (doubtful) that he would consider increasing my riba dose again.  A little contradictory now that i think about it.    I hope any of this is helpful to you, keep me updated.  
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Avatar_m_tn
i was in the telaprevir study and my riba was reduced at week 13. after a few weeks went back on normal dose when HGB went back up past 10.
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Avatar_f_tn
I was in the Telaprevir trial and my hgb was 9 in my 11th week and I was UND.  I was riba reduce 1000mg to 600 mg for 6 weeks.  It took 6 weeks for my hgb to rise to 10.4 and I was taken back up to 1000mg for a few weeks and my hgb tanked again so I was reduced to 800mg for 5 more weeks and I remained UND.

I did 24 weeks of tx and was riba reduced for 11 weeks and I've been done with tx for over a year and am now SVR.  Try not to worry to much as plenty of people have been riba reduced and went on to SVR.
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Thank you all for responding!!!  Terrific input and I really appreciate the encouragement!  Finally got my wk 8 VL - still UND, so it wasn't a fluke!  It is annoying that it takes afull 7 days to get the VL results, so long for my mind to chew on imaginary worries!
Congratulations Tippyclub - I hope to join you with SVR next year. Were you geno1a and only 24 wks tx?
Spectda - I was randomized when my hgb hit 10.4 at wk 8.  I am now in wk 10.  My hgb at prescreening was 14.9, but it had dropped to 12.8 by day1.  Unusual circumstances - I had to have surgery in between.  During the Trial screening an error was made on my chest x-ray that caused them to require a chest CT - on which the radiologist discovered that I had kidney cancer.  Now that was a miracle!  It was detected early, so they were able to remove the whole tumor and save most of the kidney and they let me into the study to start tx 4 wks post-op, but as a result my hgb was on the low side when I started day 1.
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Avatar_m_tn
My hgb went from 10.2 week 10 to 8.9 week 12, I have been randomized to riba reduction. was on 1200mg, now 1000mg. I was und between week 8 and 10. my weight is 180lbs. Not happy about the riba reduction.
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