Aa
Really need Info
Let me recap real quick, my study dose not alowe rescuse meds untill we stop vx at the end of week 12, Sunday is the end for me. Monday I go to study nurse for blood and more meds, I know I am not in group D which stops all meds at week 12, so I either have 12 more weeks of meds or 24 more weeks. My riba started at 1200mg cut in half at week 3 for low hbg, so I think I should start procrit so I can go back up on my riba for my remaining time. Who knows I may be on placebo!! and vx has no track record let! I need to do what is best for me and my health. Now my problem my DR will not give me procrit, told me I do not need it my hbg is 9.5, but I feel o.k. I showed Jim a paper (study) my DR wrote that said after you become und lowering riba will not hurt chances for svr, I hope you remember that paper Jim. Shoud I demaned procrit?? or should I just keep going like I am?? I KNOW vertex and all of our study nurse's read this site , My nurse, PDS nurse and MRE, Dr all got a letter about this site and the vx lab rats that post, I have been a good patinet, But should I put my foot down now?? I tried to get a pcr at week 4, was told no, so I had one done at week 11, I know that will not tell me placebo or soc BUT I did not want to go to week 20 and not know,sorry jen, I will find out my pcr today. What would you do. Thanks Pam
Just another thought. Now that you're approaching week 12, is it possible to remain in the trial but switch trial doctors? If so, this might be the quickest and least expensive route but I'd definitely "quiz" the new doc regrarding his philosophy on Procrit administration prior to making the move.
-- Jim
-- Jim
pln
After the 22nd he won't administer Procrit? At 9.5? You do have to think of your own health, I'd push for it with him, show him some of the info/studies that show it is necessary below 10.0 and if he still refuses, and it was me, I'd get my doctor or some doctor to help me get some. I've read a zillion studies and people DO get Procrit on studies all the time. He sounds like he is just bull headed and has a need to be in control rather than to help you when you need it! You are courageous to still be hanging in there with Hgb at 9.5. Mine is usually around 10 or 11 and it just about does me in some days! I hope you get Procrit soon.
PDS
I hope the rash has subsided and you are feeling ok. You are very strong to have gone through all of that and still hang in there in the study. I hope it is smooth sailing from here on out.
After the 22nd he won't administer Procrit? At 9.5? You do have to think of your own health, I'd push for it with him, show him some of the info/studies that show it is necessary below 10.0 and if he still refuses, and it was me, I'd get my doctor or some doctor to help me get some. I've read a zillion studies and people DO get Procrit on studies all the time. He sounds like he is just bull headed and has a need to be in control rather than to help you when you need it! You are courageous to still be hanging in there with Hgb at 9.5. Mine is usually around 10 or 11 and it just about does me in some days! I hope you get Procrit soon.
PDS
I hope the rash has subsided and you are feeling ok. You are very strong to have gone through all of that and still hang in there in the study. I hope it is smooth sailing from here on out.
Pam just had to run and go do her "meals on wheels" that she does every Fri. I completely agree with you about this though. I frankly think it's a little unheard of for a doctor to unequivocally state that he doesn't believe in procrit and won't prescribe it.
By the way, her doc, as you probably know, is Dr. Shiffman. We actually just left a message for him on his recorder and by we, I mean I did. It's kinda scary to do that on someone else's behalf but she's so easy going that her study doc and nurse seem to discount her questions and opinions. She doesn't get listened to. Anyway, I said I was Pam and that I very much wanted to be prescribed procrit at the completion of the study and that I understood my insurance was paying for it. I asked him, with all due respect, would he absolutely not prescribe this kind of rescue drug and if that were the case, we need to have a conversation about it because unless there's some medical reason that I'm (she's) unaware of, I'm going to insist on being prescribed a rescue drug and raising ribavirin accordingly.
Damn, I hope I did the right thing. I guess we'll see what he says when he returns the call. Probably just really ticked him off but I was respectful and professional, just very firm. Almost can't believe I did it but it's what she wanted to say - she's just too nice and maybe a little in awe of Dr Shiffman.
By the way, her doc, as you probably know, is Dr. Shiffman. We actually just left a message for him on his recorder and by we, I mean I did. It's kinda scary to do that on someone else's behalf but she's so easy going that her study doc and nurse seem to discount her questions and opinions. She doesn't get listened to. Anyway, I said I was Pam and that I very much wanted to be prescribed procrit at the completion of the study and that I understood my insurance was paying for it. I asked him, with all due respect, would he absolutely not prescribe this kind of rescue drug and if that were the case, we need to have a conversation about it because unless there's some medical reason that I'm (she's) unaware of, I'm going to insist on being prescribed a rescue drug and raising ribavirin accordingly.
Damn, I hope I did the right thing. I guess we'll see what he says when he returns the call. Probably just really ticked him off but I was respectful and professional, just very firm. Almost can't believe I did it but it's what she wanted to say - she's just too nice and maybe a little in awe of Dr Shiffman.
Just wanted to add that my doctor also is very hesitant to use Procrit, he feels it "brings it's own problems" with it.
However, in spite of that, he WILL prescribe it if the patient's Hgb falls below 10 and the patient is feeling awful.
Sounds like she meets tht criteria with Hgb at 9.5 and having trouble walking up an down stairs.
It was very supportive and kind of you to call for her and advocate for her! How nice to have a friend like that when she is feeling so tired and weak. I think you did the right thing.
PLN
I coordinated a meals on wheels program for many years and people like you, the people that take the time to deliver the meals each day/week are some of the best, most generous loving people in the world. Thank you so much for doing that, I know how very important tat is to the recipients.
A study was done about this and it showed that the people lived longer and had a better QOL due to the person delivering the meals bringing that slice of joy into their lives each day. The impact of the volunteer bringing the meal was even more valuable than the meal itself. And to be doing that in spite of your low Hgb, you are a true hero.
However, in spite of that, he WILL prescribe it if the patient's Hgb falls below 10 and the patient is feeling awful.
Sounds like she meets tht criteria with Hgb at 9.5 and having trouble walking up an down stairs.
It was very supportive and kind of you to call for her and advocate for her! How nice to have a friend like that when she is feeling so tired and weak. I think you did the right thing.
PLN
I coordinated a meals on wheels program for many years and people like you, the people that take the time to deliver the meals each day/week are some of the best, most generous loving people in the world. Thank you so much for doing that, I know how very important tat is to the recipients.
A study was done about this and it showed that the people lived longer and had a better QOL due to the person delivering the meals bringing that slice of joy into their lives each day. The impact of the volunteer bringing the meal was even more valuable than the meal itself. And to be doing that in spite of your low Hgb, you are a true hero.
You're a good friend with good intentions. I doubt the doctor listens to his own messages anyway. You certainly were clear to the point and hopefully that will prompt a direct response.
I personally know nothing about Shiffman other than he appears to have a good reputation. Based on the paper below, I doubt if he is against Procrit per say, so maybe there is something else going on. Has PLN talked directly to Shiffman or is everything coming through the study nurse?
Anyway, here's something on Shiffman and dose reduction.
"Data presented by Mitch Shiffman from the HALT-C study, which Afdhal referred to in this oral talk at DDW, showed dose reductions in ribavirin had a more negative effect than a dose reduction in Pegasys on end-of-treatment response and sustained viral response in the HALT-C study. Shiffman reported that sustained viral response was 23% (n=118, no dose reductions) and when there was a dose reduction only in Pegasys the SVR was still 23% (n=70). But when only ribavirin dose was reduced (n=36) the sustained viral response (SVR) was 11% (23% vs 11%, p<0.008). When there were dose reductions for both Pegasys and ribavirin the SVR was 8%."
http://www.natap.org/2003/DDW/day18.htm
And here's another:
"...he use of epoetin (EPO) [Procrit] has been proven to reduce anemia and the need for RBV dose reductions. Study results presented at the 56th AASLD by Shiffman and colleagues show that the use of EPO also increases sustained virological..."
http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_a.html
I personally know nothing about Shiffman other than he appears to have a good reputation. Based on the paper below, I doubt if he is against Procrit per say, so maybe there is something else going on. Has PLN talked directly to Shiffman or is everything coming through the study nurse?
Anyway, here's something on Shiffman and dose reduction.
"Data presented by Mitch Shiffman from the HALT-C study, which Afdhal referred to in this oral talk at DDW, showed dose reductions in ribavirin had a more negative effect than a dose reduction in Pegasys on end-of-treatment response and sustained viral response in the HALT-C study. Shiffman reported that sustained viral response was 23% (n=118, no dose reductions) and when there was a dose reduction only in Pegasys the SVR was still 23% (n=70). But when only ribavirin dose was reduced (n=36) the sustained viral response (SVR) was 11% (23% vs 11%, p<0.008). When there were dose reductions for both Pegasys and ribavirin the SVR was 8%."
http://www.natap.org/2003/DDW/day18.htm
And here's another:
"...he use of epoetin (EPO) [Procrit] has been proven to reduce anemia and the need for RBV dose reductions. Study results presented at the 56th AASLD by Shiffman and colleagues show that the use of EPO also increases sustained virological..."
http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_a.html
I didn't realize that it was Shiffman and now really surprised at the procrit psoition. I'm glad Jim cam up with those excerpts because that's what I thought Shiffman's (and most other to hep docs was) to use rescue drugs judiciously to avoid dose reductions. Maybe it is interference being run by another doc or nurse. It's much easier to say no than to explore possibilities and remedies. It's nice that you intervend and hopefully the Doc will respond accordingly.
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.
