Thankyou. My doc has recommended keeping me at 400 riba, my HGB yesteday was 9.3. Now on 60,000 procrit, extra 20,000 taken today. I was going to go to 400 but after reading your above post I am going to follow your protocol. 200 in am, and 400 in PM. If that's the protocol why isn't Mayo going by that???? They did the trials they should know. I guy I see was head of trials. Why should I trust you more then the doc? It's a gut feeling.
I am having the same problem. After transfusion went from HGB 8 to 9.7. I've been on 40,000 procrit, yesterdays lab had me at 9.3. My riba reduced to 600 (my choice dr said 400). So at least today he increased my procrit to 60,000 per week. I am 2weeks post incevik I think you are 3-4 wks post. I had an iron study today, iron OK Ferritin through the roof, over 2000. Not sure what that means but it appears related to our HGB problem. I did read on the incevik insert that improvement in anemia after incevik can take up to 12 weeks. This is our problem I think. And I doubt I will ever get back up to 1000 per day. I'll be lucky to finish out at 800. Just my guess.
I feel for you. I was there myself. How long have you been at 60,000? It can take a few weeks to get max benefit. Also, are you taking high-dose folic acid?
Dropping one riba pill should scoot you back up right quickly.
they dropped me to 800mg of Riba for 2 weeks, and 3 injections of procrit a week. i was at 8.4 and dropping. when i got down to 7 in 2 weeks, i had to get 3 pints. now i feel soooooo much better. i am still at 800mg of Riba, because of a severe cough and the cool rash i have. also, i am a CC aleale, which indicates a good response to SOC. i am only taking one shot of procrit now. 6 weeks to go.
i would think they would bump the procrit for you.
anemia is a good indicator that the Riba is being fully absorbed....good luck dude.
Billy,
If you doc reads the ribavirin package insert directions it says that for anemia the standard protocol is to reduce ribavirin to 600 mg per day if hemoglobin <10 g/dl, first. If < 8.5 g/dL interrupt dose. Then see if hemoglobin level rise. In the clinical trial most patients did rise. Only 4% stopped treatment owing to anemia.
So your doc is changing from 1000 mg to 0 mg. This was never done during clinical trials. So there is no data on the outcome. Why doctor's make up their own protocols is a mystery to me as it negates all the data acquired during the trials. Especially in this case, when trial data shows that reducing or interrupting riba has no effect of SVR rates.
1. The proper protocol is to reduce ribavirin to 600 mg when hemoglobin is less than <10 g/dl. (* One 200 mg tablet in the morning and two 200 mg tablets in the evening).
2. Discontinue Ribavirin Tablets if: <8.5 g/dL.
Once Ribavirin tablets have been withheld due to either a laboratory abnormality or clinical manifestation, an attempt may be made to restart Ribavirin tablets at 600 mg daily and further increase the dose to 800 mg daily. However, it is not recommended that Ribavirin tablets be increased to the original assigned dose (1000 mg to 1200 mg).
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You can read the Ribavirin package insert yourself
http://www.drugs.com/pro/ribavirin.html
Look at the section "Dose Modifications"
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Sulkowski MS, Reddy R, Afdhal NH, Di Bisceglie AM, Zeuzem S,
Poordad F, et al. Anemia had no effect on efficacy outcomes in treatment-
naive patients who received telaprevir-based regimen in the
ADVANCE and ILLUMINATE phase 3 studies. J Hepatol 2011;
54(suppl 1):S195.
"SVR was achieved by 76% (243/320) of patients with ribavirin dose reduction in the T12PR compared with 72% (408/565) of patients without ribavirin dose reduction in the T12PR.
Conclusions: In patients treated with telaprevir-based therapy, anemia as well as ribavirin dose reduction had no apparent effect on SVR rates as compared with patients treated with peginterferon/ribavirin alone. These data suggest that management of treatment-related anemia with ribavirin dose reduction appeared not to impact SVR with telaprevir-based therapy."
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Hepatology
Volume 54, Issue 4, pages 1433–1444, October 2011
AASLD
"An update on treatment of genotype 1 chronic hepatitis C virus infection: 2011 practice guideline by the American Association for the Study of Liver Diseases" 26 SEP 2011
"Because hematopoietic growth factors were not permitted during the TVR trials, there was a 5%-6% higher rate of treatment discontinuation among those who developed anemia than among those who did not. However, neither anemia nor RBV dose reduction adversely affected the SVR rate. Of note is that in the BOC trial, SVR rates in patients managed by RBV dose reduction alone were comparable to those in patients managed with erythropoietin therapy. Similarly, in the TVR trials, dose reduction of RBV had no effect on SVR rates, and therefore dose reduction should be the initial response to management of anemia. Because the duration of BOC therapy (24 to 44 weeks) is longer than the duration of TVR therapy (12 weeks), the frequency of anemia is likely to be greater in BOC-containing regimens, leading to more RBV dose reductions and consideration of erythropoietin use. However, the potential benefits of erythropoietin must be weighed against its potential side effects, the fact that its use in HCV therapy is not approved by the FDA, and its considerable cost. If a PI treatment–limiting adverse event occurs, PegIFN and RBV can be continued provided that an on-treatment response had occurred. There are no data to help guide substitution of one for the other HCV PI. If a patient has a serious adverse reaction related to PegIFN and/or RBV, the PegIFN and/or RBV dose should be reduced or discontinued. If either PegIFN and/or RBV are discontinued, the HCV PI should be stopped. Additional information on management of other adverse events can be found in the package insert."
Good luck, Billy!
Hector
just got a call back from docs...they said stop riba today...i already took 600...and get a cbc blood test tomorrow...the funny thing is all my other blood work looks so good...my alts 17....my wbc 2.8..platelets 208...iron is fine..my poop has been dark lately so maybe i'm bleeding??? but i think i've been a little dehydrated ...i'm eating fine too..take zofran for the nausea....i do have pretty bad sores and rash going on...i think i really suck in the riba....i feel it every time i take it......anyway...i'll get through this .....billy
Sorry didn't read fully. You are on 60,000 units so not a lot you can do besides reduce. I found that instead of taking 60,000 units once per week 40,000 every 4-5 days which is the same as 60,000 kept my hub level a little more constant. What day was the blood draw compared to your procrit injection?
is your iron level low procrit known to not work well if iron level low.
Sorry to hear that. you have had it rough. hopefully they will get you straightened out. My real hope is not to hear you say Im done anytime soon!
I am sorry to hear that it is so low again. Considering you are already on procrit it doesn't seem likely to go up on it's own without a reduction. Personally I think it's better to reduce it a little then to have to react with a major reduction or a transfusion if it goes into the low 7s or even lower. How much procrit are you taking?
-Dave