Aa
Hemoglobin at 8.0 - stopping ribavirin?
I got a call from my doctor today. My hemoglobin fell down to 8.0 (from 9.1 last week). I was told to stop taking ribavirin immediately and then take another CBC in a week.
I've been taking 1200 mg of ribavirin daily since May 2009. At first I was taking it with weekly pegasys shots, but that didn't work - I was still detectable at week 16 with viral load going up and down. Then in late September 2009 I was switched from pegasys to daily infergen and continued with the same dose of ribavirin. Undetectable since week 8 on infergen. I asked the doc about procrit, he said they prefer to avoid it...
My concern - if I stop ribavirin now, even if it's only for a week, will it lower my chances for SVR? If you had a similar experience with anemia and stopping riba for some time during tx, and still achieving SVR? I am 1b, 170 lbs, female. This is my week 17 on daily infergen.
I've been taking 1200 mg of ribavirin daily since May 2009. At first I was taking it with weekly pegasys shots, but that didn't work - I was still detectable at week 16 with viral load going up and down. Then in late September 2009 I was switched from pegasys to daily infergen and continued with the same dose of ribavirin. Undetectable since week 8 on infergen. I asked the doc about procrit, he said they prefer to avoid it...
My concern - if I stop ribavirin now, even if it's only for a week, will it lower my chances for SVR? If you had a similar experience with anemia and stopping riba for some time during tx, and still achieving SVR? I am 1b, 170 lbs, female. This is my week 17 on daily infergen.
ditto to all the above
I have a doctor who prefers not to do any test or prescribe anything...and admits it's the expense and fighting with insurance as her reasons...truth is, some Insurance companies give kick backs to docs for NOT doing expensive tests etc. that they never will tell you.
a short riba rest might help a little, but it takes months to build in your system, and months to leave it, so what most good docs do is to get the EPO going, and reduce you a little until the epo gets you back up...then when you get to 10-11 you can return to full dose.
I would't settle for his preference not to use epo because the research all shows folks do better on it than not, and though they are working overtime to figure a way around it (because it costs 6000 a month) there still is no good SOC tx that doesn't do a number on your blood....there may be in another year or two...but not now.
Bottom line is, insurance cannot deny it at that number...even medicare pays for it once you are at 10, so all he needs to do is order it.
If you don't have good coverage, you can negotiate with the specialty pharmacy...
most of them will accept what the INs pays with no copay if you tell them you can't afford it. Caremart and Walgreens and Mcesson's all do this.
Just don't take no for an answer...your doc needs to know 8 is not acceptable and that malpractice is what he's attempting. MAL-not good ... Practice...yes, he should!!
I have a doctor who prefers not to do any test or prescribe anything...and admits it's the expense and fighting with insurance as her reasons...truth is, some Insurance companies give kick backs to docs for NOT doing expensive tests etc. that they never will tell you.
a short riba rest might help a little, but it takes months to build in your system, and months to leave it, so what most good docs do is to get the EPO going, and reduce you a little until the epo gets you back up...then when you get to 10-11 you can return to full dose.
I would't settle for his preference not to use epo because the research all shows folks do better on it than not, and though they are working overtime to figure a way around it (because it costs 6000 a month) there still is no good SOC tx that doesn't do a number on your blood....there may be in another year or two...but not now.
Bottom line is, insurance cannot deny it at that number...even medicare pays for it once you are at 10, so all he needs to do is order it.
If you don't have good coverage, you can negotiate with the specialty pharmacy...
most of them will accept what the INs pays with no copay if you tell them you can't afford it. Caremart and Walgreens and Mcesson's all do this.
Just don't take no for an answer...your doc needs to know 8 is not acceptable and that malpractice is what he's attempting. MAL-not good ... Practice...yes, he should!!
Agree with above. You did not clear the virus with pegylated interferon and 1200 mg of ribavirin so it's very important that you maintain an acceptable blood serum level of ribavirin along with the consensus interferon. You are at week 17 and UND and it's understandable why your doctor wants to stop the ribavirin for one week with a 8.0 hemoglobin level. You have reached a dangerously low hemoglobin level. Ribavirin reduction or even transfusion will help temporarily but it is crucial to your treatment that you insist your doctor prescribe epogen.
Diamond_Lil
Diamond_Lil
Sorry to hear about your hemoglobin problems. I agree the others that you should get a second opinion before proceeding.
Vik
Vik
Agree 100% with FLGuy. You do need to maintain your course of treatment and if you drop the riba it does hurt your chances (what week are you on?) especially crucial to take it all the first 12 weeks when you are trying to get to UND (and make sure that you get them all).
I do not understand why he will not give you Procrit. Our insurance certainly does pay for it. Most doctors do understand the signficance and importance. Any chance you can get an appointment right away with a hemotologist who might prescribe it for you if he won't? Just getting up over ten again will be such a huge RELIEF you won't believe it!
Good luck!
Removing the riba may help you feel better - after a while. But the issue will be what happens next? Unless something changes (transfusion or introduce procrit) it's seems reasonable that the same thing will happen again. Procrit has proven to help people stay the course and it's use is widely accepted by docs. Getting a better understanding of the " why not procrit " would be a good thing to clear up.
Sorry to hear you are having this problem. I have been there and I know what it feels like. What I didn't know at the time was how dangerous hemaglobin that low is. So be careful. That being said, when my hemaglobin dropped to 7.8 and I refused the transfusion they wanted to do, my doctor reduced my riba to 600 mg and started Procrit. Hemaglobin came up quickly and I was able to go back to full dose in a couple of weeks. Did your doctor say why they avoid Procrit? I could not have made it through 72 weeks of treatment without it.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
