Aa
Procrit and Thalassemia ( anemia)
Those any one know if it's OK to take procrit when you have Thalassemia ( mediterranean anemia)? I'm starting to get cold feet and after seeing the post before mine I'm wondering if it's OK for me to take. As I'm not allowed to take iron. Please help!!!!!!!!!!!!!!!!
Bob
Bob
Just spoke with my reg. treating doc few minutes ago. He has agreed to extend my tx another two months. Yay.
But we discussed transfusions, and my doc is against it except in an emergency situation. His feeling is that we're dealing with something that we weren't screening the blood supply for 20 years ago. What if I pick up something that we don't know to screen for now? Makes sense.
I don't think it's the standard of care to treat hemolytic anemia with transfusions to support Hep C tx. In fact, I think it's a rare doctor who is comfortable doing it. That being said, the doctor I know who does it spends a lot of time working with thalassemia major patients, children.
I'm assuming you have thal minor. My baseline hgb is 11.3 with no tx and no procrit, so you sound about where I was at before I started. As long as your doctor is aware of what's going on, I think you'll be fine. She'll want to monitor your hgb levels weekly though because riba drops that hgb fast. Personally, I'd ask to start procrit now if she's willing. It takes two weeks approx to kick in, and once you drop to a certain point, it's difficult to bring it back. That's why I had to stop tx the first time. First doc waited until I was in the 7's before intervening.
As far as side fx, I haven't really noticed any with procrit. I generally feel a little better a day or two after a shot. Other than polka-dotting your tummy with little needle dots or the occasional capillary bruise, it's all right. No big deal really.
But we discussed transfusions, and my doc is against it except in an emergency situation. His feeling is that we're dealing with something that we weren't screening the blood supply for 20 years ago. What if I pick up something that we don't know to screen for now? Makes sense.
I don't think it's the standard of care to treat hemolytic anemia with transfusions to support Hep C tx. In fact, I think it's a rare doctor who is comfortable doing it. That being said, the doctor I know who does it spends a lot of time working with thalassemia major patients, children.
I'm assuming you have thal minor. My baseline hgb is 11.3 with no tx and no procrit, so you sound about where I was at before I started. As long as your doctor is aware of what's going on, I think you'll be fine. She'll want to monitor your hgb levels weekly though because riba drops that hgb fast. Personally, I'd ask to start procrit now if she's willing. It takes two weeks approx to kick in, and once you drop to a certain point, it's difficult to bring it back. That's why I had to stop tx the first time. First doc waited until I was in the 7's before intervening.
As far as side fx, I haven't really noticed any with procrit. I generally feel a little better a day or two after a shot. Other than polka-dotting your tummy with little needle dots or the occasional capillary bruise, it's all right. No big deal really.
I'm glad you were able to get your Dr. to extend your treatment. Yes, I'm Thalassemia minor(beta),today my HGB is 11.5 no tx and no procrit. However, I will start meds Monday and procrit is on it's way. I'm geno 2B so I'll only have to do tx 24 weeks. I hope I do as well as you. About your family and Thalassemia,I did reseach on it and I should not have it. As my family back ground is all German, my sister and brother do not have it, yet all three of my children tested positive for Thalassemia minor when they were around 2 and 3. Now some how my daughter out grew it, but both my boys still have it. Back then I did not know I had it, My Dr. in NY found it in 1992. So I know how my children got it, but the millon dollar question is HOW DID I GET IT???
After thinking about it , I agree with your Dr. about no transfusion. The ones who have Thal major is an other story. Will let you know how I do on tx.
BB
After thinking about it , I agree with your Dr. about no transfusion. The ones who have Thal major is an other story. Will let you know how I do on tx.
BB
Thanks for the advice and I to have many questions like iceboy. About the complications, what are they if we don't treat as the Dr. stated in the childrens hospital? Will start treatment Monday, as the Dr. wants to start in the beginning of the week. My HGB today is 11.5 thats better then last week.I spent an hour this morning with the nurse showing me how to use meds. Will let you know how it goes. But let us know about complications.
Thanks again,
Bob
Thanks again,
Bob
I have been diagnosed with thalassemia minor (though I'm awaiting some genetic tests to determine if it is in fact intermedia, like many people in my family), and I am currently in my 45th week of treatment. I am on Procrit, and I have been taking it before I even started the combination peg/rib treatment. The first attempt at treatment ended 3 months into it because of the severe anemia, so my doc thought it'd be a good idea to get a jump on it by boosting my hemoglobin with procrit before starting on the riba.
Although I'm thrilled to have made it this far in the treatment, I am trying very hard to have it extended due to the fact that I've had to drop my riba dosage significantly (for a month I was completely off of it) because of the low hgb. It has been a struggle, I'll admit. And my dosage for procrit has climbed from 10,000 units a week to 80,000 units. Right now, I think my hgb is 8.7 (which I'm actually comfortable with...not downhill skiing right now, and pole vaulting activities had to be put on hold, but...). Still my nurse practitioner is nervous and is considering lowering my riba from 400 to 200. That's only one pill a day.
On a good note, my last two PCRs have come back undetectible, so I am hopeful.
I have been in contact with a gastro doc at a children's hospital who deals with thal patients who have Hep C. His recommendation is to treat it very aggressively because of the complications thal can bring on later. He also recommends blood transfusions as a way to keep your hgb up. Iron issues, unfortunately, are complicated. Even though thal patients are told to keep iron down in their diet, I'm on two iron pills a day as is necessary for the procrit to do its thing.
I'm currently trying to convince my doc to up my riba for the last bit of tx, extend tx maybe two months, and consider transfusion...but it's a real uphill battle. Everyone's scared to do transfusions, and it's not typical in the normal hep c setting. But I do know of a few patients who have received transfusions in order to keep them on treatment...and they didn't have thal.
Anyway, I hope this helps. Let me know if there are any other questions I can answer. I'm in the middle of putting together practically a proposal for my doctor in order to convince him to listen to me on treatment extension and riba dosage. We'll see.
Good luck. And a word of advice...figure out exactly how you want your treatment to go and sit down with your doctor and make it clear, see if they're willing to work with you that way. Otherwise, you might find yourself having all your medical decisions decided without your input. And have your doc consider procrit before you put riba in your body. That stuff breaks down your RBCs pretty darn quickly.
Although I'm thrilled to have made it this far in the treatment, I am trying very hard to have it extended due to the fact that I've had to drop my riba dosage significantly (for a month I was completely off of it) because of the low hgb. It has been a struggle, I'll admit. And my dosage for procrit has climbed from 10,000 units a week to 80,000 units. Right now, I think my hgb is 8.7 (which I'm actually comfortable with...not downhill skiing right now, and pole vaulting activities had to be put on hold, but...). Still my nurse practitioner is nervous and is considering lowering my riba from 400 to 200. That's only one pill a day.
On a good note, my last two PCRs have come back undetectible, so I am hopeful.
I have been in contact with a gastro doc at a children's hospital who deals with thal patients who have Hep C. His recommendation is to treat it very aggressively because of the complications thal can bring on later. He also recommends blood transfusions as a way to keep your hgb up. Iron issues, unfortunately, are complicated. Even though thal patients are told to keep iron down in their diet, I'm on two iron pills a day as is necessary for the procrit to do its thing.
I'm currently trying to convince my doc to up my riba for the last bit of tx, extend tx maybe two months, and consider transfusion...but it's a real uphill battle. Everyone's scared to do transfusions, and it's not typical in the normal hep c setting. But I do know of a few patients who have received transfusions in order to keep them on treatment...and they didn't have thal.
Anyway, I hope this helps. Let me know if there are any other questions I can answer. I'm in the middle of putting together practically a proposal for my doctor in order to convince him to listen to me on treatment extension and riba dosage. We'll see.
Good luck. And a word of advice...figure out exactly how you want your treatment to go and sit down with your doctor and make it clear, see if they're willing to work with you that way. Otherwise, you might find yourself having all your medical decisions decided without your input. And have your doc consider procrit before you put riba in your body. That stuff breaks down your RBCs pretty darn quickly.
Hi,
So glad to hear from you, I just couldn't remember who had Thalassemia ( brain fog). I am an 11 also, and so glad to hear you are on week 6. My dr said he cured a good number of Thalassemia patients with geno 1, if I remember right you are geno 1. There's alot of hope here for all of us who has this anemia. Thanks for all your knowledge and help. Glad to hear your blood jumped back up, I think you will make it. You seem to be taking to the Erythropoietrin well.I will see all Drs. today will let you know how I do.
Keep the faith and thanks again,
Bob
So glad to hear from you, I just couldn't remember who had Thalassemia ( brain fog). I am an 11 also, and so glad to hear you are on week 6. My dr said he cured a good number of Thalassemia patients with geno 1, if I remember right you are geno 1. There's alot of hope here for all of us who has this anemia. Thanks for all your knowledge and help. Glad to hear your blood jumped back up, I think you will make it. You seem to be taking to the Erythropoietrin well.I will see all Drs. today will let you know how I do.
Keep the faith and thanks again,
Bob
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.
