My doctor refuses transfusions, I think no exception. I asked why and was told there may be virus we are unaware of like HCV, only to be found out in the future. Have any of you had the doc say something similiar? Seems it should be my choice as an option. Haven't gotten to that point but with all this dropping in HGB even with procrit, I'm worrying ahead of time, like I always do.
You can always consult with a hematologist if it's a concern. I'm sure they'd have no problem ordering transfusion. Hope your doctor doesn't feel that way when patients need blood to save their lives. Yikes!
I think he would dose reduce the riba first. Lifesaving is a different situation. He has a point and I suppose if I needed to reduce from 1000 to 800 riba and have procrit I would meet the 80% threshold for medications which is supposedly equal to 100% for SVR. Then again this is a Mayo rule. They run things differently then private practice MDs. Although you are right, if things got that bad and they refused I would go to my primary care MD and ask for a transfusion. I work in a hospital it would be easy.
This is always an issue that needs to be discussed prior to treatment.
When and for what reasons will you stop treatment?
Will you provide helper drugs if my blood levels tank?
What levels will you let my blood levels get to before prescribing Procrit (for example)?
What levels will you let my blood levels get to before reducing dosages?
Transfusions are usually only an option when the treating patient is a cirrhotic.
You don't say how low your blood level is?
Crossroadsec (who has cirrhosis) Hb has gone down to 7 and maybe 5 (!) before they gave her a transfusion. She is tough as nails and has been dosage reduced and is hoping to Procrit but is having problems with insurance. If anyone needs Procrit it is her.
Transfusions are usually something a hepatologist at a transplant center would be comfortable with. The need for transfusions are rare.
"In boceprevir clinical trials, anemia was managed with RBV dose reduction and/or erythropoietin. Forty-three percent of boceprevir-treated patients received erythropoietin to manage anemia. Approximately 3% of patients required blood transfusion. "
"In telaprevir clinical trials, erythropoietin use was prohibited and anemia was managed through RBV dose reductions. In a pooled analysis of patients from the ADVANCE and ILLUMINATE trials, 12% of patients (44 of 361) who had hemoglobin reductions to < 10 g/dL required blood transfusion vs 5% of those from the control arms (5 of 92)."
The good news is...that those with anemia have a higher rate of SRV vs those without anemia for both telaprevir and boceprevir in clinical trials.
"In the same pooled analysis of treatment-naive patients in ADVANCE and ILLUMINATE, RBV dose modifications (reductions or interruptions) were not associated with lower rates of SVR in patients who were treated with a telaprevir-based regimen. Anemia appeared to have no association with SVR rates. By contrast, anemia as well as RBV dose reduction was associated with lower SVR rates in patients treated with pegIFN/RBV only."
The bottom line -
"• Modest RBV dose reduction (200-mg increments) is a good approach for managing anemia in boceprevir- or telaprevir-treated patients, as it does not appear to affect response. Some clinicians may choose to use erythropoietin, particularly for severe or symptomatic anemia. However, use of erythropoietin for HCV anemia is off label, and care should be taken to not allow the hemoglobin to exceed 12 g/dL.
• Use of erythropoietin may be necessary to avoid discontinuation of boceprevir or telaprevir. Transfusion may be required for patients and can be effective, particularly for cirrhotics. Once boceprevir or telaprevir has been stopped, it should not be restarted. Best clinical judgment should be used. Boceprevir and telaprevir must not be dose reduced."
All quotes from
A Practical Guide for the Use of Boceprevir and Telaprevir for the Treatment of Hepatitis C - Sept 2011
By: Nezam H. Afdhal, MD, FRCPI, Geoffrey M. Dusheiko, MD, FCP(SA), FRCP, Xavier Forns, MD, Donald M. Jensen, MD, Fred Poordad, MD
Good stuff Hector. I had a fantabulous day! Cleaned, colored hair, mani n pedi. Sigh. What a relief. I'm gonna focus on the positives of transfusion. If I get into fear? I can go into denial real quick. Lol. I feel great. My labs r good n I was UND at weeks 4 n 8. My mind is focused like a laser on that.
I think it is SO smart to plan ahead n know exactly what they will do regarding rescue drugs. I hit glitches due to insuance, but I STILL wish I had gone over this more thoroughly w my dr.
this topic jumped out at me cuz i just got released from the hospital today after passing out on friday. i got home and 2 hours later my doctor called me and told me that my HGB was down to 7 and i had to go to the hospital immediately. i just had my weekly cbc's done on thursday. i knew it was really low. i have been on procrit for months and they dose reduced on the riba to 800mg 2 weeks ago. i got 3 pints and my hgb went up to 10. i feel great. they stopped all meds for me and i have to call tomorrow to see when i can start up again. i am at 38 of 48 weeks.
if it was me, i would get a new doctor. btw, i am clear and on SOC.
Boceprevir and telaprevir must not be dose reduced. Boceprevir and telaprevir must not be stopped and then restarted. "
Ditto you gotta follow the rules. While the blood supply can never be considered 100% safe, when your life is being threatened and you need a transfusion it'd be best to go another route and try to get it.
sounds to me like you have a very wise Doctor. I got this hideous virus from a blood transfusion before the even knew what Hepatitis C was. I would have to really weigh the odds before I accepted a transfusion as a way out of anemia, that being said - of course a life threatening situation would be a no brainer
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