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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
I just realize what I posted about Thalassemia, ( that my mother had to be carrier) I meant my father had to be. Both parents are deceased. Will you informed about how I do on tx.
Have a Happy New Year!!!!!!!!!!!!!
BB
Have a Happy New Year!!!!!!!!!!!!!
BB
That's so odd, your background. I've never heard of someone not having a family history of it...though it just could be that both your parents happened to have the recessive gene for it. I've never heard of anyone growing out of it though. That's wonderful.
It runs on my mom's side of the family, and she's from Taiwan. Unfortunately, I believe her oldest brother died a long time ago due to kidney complications relating to it. She has another brother who's now on dialysis who also has it. And there's another brother who died not too long ago, who taught political science in Taipei while regularly maintaining an hgb level in the 4's. Crazy, huh?
It's a very strange, very complicated disease. A long time ago, I went to a diet doctor who ran some blood tests, and he told me that my RBCs were kind of shaped funny. My cousin's RBCs are shaped like little tears. I wish I had a better understanding of the disease and its implications.
The good thing, though, is if you know about, you're able to monitor it. The better thing is you have minor instead of intermedia, so hopefully, you and I will never have to deal with much more than low energy levels. <g>
Anyway, definitely keep me posted on your tx. I believe you said you're starting this weekend... or today? In any event, once you do your first shot, do yourself a favor and drink a lot of water. That will make the biggest difference in how you will throughout the night and the next day. Water's going to be your best friend during tx. So cheers and good luck! Here's to SVR!
It runs on my mom's side of the family, and she's from Taiwan. Unfortunately, I believe her oldest brother died a long time ago due to kidney complications relating to it. She has another brother who's now on dialysis who also has it. And there's another brother who died not too long ago, who taught political science in Taipei while regularly maintaining an hgb level in the 4's. Crazy, huh?
It's a very strange, very complicated disease. A long time ago, I went to a diet doctor who ran some blood tests, and he told me that my RBCs were kind of shaped funny. My cousin's RBCs are shaped like little tears. I wish I had a better understanding of the disease and its implications.
The good thing, though, is if you know about, you're able to monitor it. The better thing is you have minor instead of intermedia, so hopefully, you and I will never have to deal with much more than low energy levels. <g>
Anyway, definitely keep me posted on your tx. I believe you said you're starting this weekend... or today? In any event, once you do your first shot, do yourself a favor and drink a lot of water. That will make the biggest difference in how you will throughout the night and the next day. Water's going to be your best friend during tx. So cheers and good luck! Here's to SVR!
Hi,
I start tx Monday, I think I know what I'm in for????? How ever I will drink lots of water. The meds are here but th Dr. wants to start on a Mon.
About Thalassemia, If two parents are carriers then the child will have Thalassemia MAJOR and that is serious. So I know only my mother had to be the carrier, for me to have it. I heard you have to be careful who you marry, because if their also a carrier then the chilren will be major.
Will keep you posted , thanks for all your help.
BB
I start tx Monday, I think I know what I'm in for????? How ever I will drink lots of water. The meds are here but th Dr. wants to start on a Mon.
About Thalassemia, If two parents are carriers then the child will have Thalassemia MAJOR and that is serious. So I know only my mother had to be the carrier, for me to have it. I heard you have to be careful who you marry, because if their also a carrier then the chilren will be major.
Will keep you posted , thanks for all your help.
BB
Hiya, Goof! Thanks! I don't know if it's the new year or what, but after zombie-ing around in a semi-comatose state for the past few months (pushing a rock, pushing a rock), I feel energized, ready to take care of business, improve health, do all the things I'm supposed to be doing. And I think I'm finally ready to give up raspberry iced tea. <sigh> It is truly my weakness.
How you been? Good spirits, I hopes.
How you been? Good spirits, I hopes.
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
Hi Bob.
I have thalassemia minor and Im currently on tx week 6. I started treatment with HGB 12,5 (Im normally 11) and fell down to 9,0. (yesterdays results) Doc just called, and if I fall more he will start me on Erythropoietin. There is nothing else he can do. I go in for CBC every 4 days.
I dont feel much worse, with HGB as 12 or 9. The bottom line is I don
I have thalassemia minor and Im currently on tx week 6. I started treatment with HGB 12,5 (Im normally 11) and fell down to 9,0. (yesterdays results) Doc just called, and if I fall more he will start me on Erythropoietin. There is nothing else he can do. I go in for CBC every 4 days.
I dont feel much worse, with HGB as 12 or 9. The bottom line is I don
Thanks for the info it's good to know procrit works. Do you have Thalassemia anemia?
Bob
Bob
Hi, I'm a 2b 18/24, 0/1, 1.8m vl, starting Hgb 12.8, 48 y/o f. Dropped to well under 10 in about 7-10 days at about wk 3. Procrit immediately heavily (80k/wk) administered, with fabulous results. I got up to 14+ and now I'm at 13+ w/ only 20k/wk Procrit. It is a miserable shot and I think it has GI consequences, but dang it works. You should be just fine. Deb
That is what I did I started a notebook before treatment with all the good ideas and notes and stuff.
Make sure your doctor is monitoring your CBC every week to look at your HGB especially around week 3/4. If you are on top if it when it gets down to like 10 then you can take Procrit of Epogen and won't have to go off tx. It worked like a CHARM for me - after a few weeks it was tolerable and after a few months I have NO problems at all. Back up to almost 15.
If you can really monitor it...you shouldn't have any problem. While the anemia is horrible horrible horrible it DOES PASS. Knowing that is one of the biggest reasons people quit tx - helped me to realize that it would be worth it to fight through it. Now that I did I am like THANK GOD I didn't quit just because of that!
:)
Definitely remember the lotion. If you moisturize beforehand a bit maybe you will never get it at all! I should have been signing myself AlligatorGirl for the past few months let me tell you!
Debby
Make sure your doctor is monitoring your CBC every week to look at your HGB especially around week 3/4. If you are on top if it when it gets down to like 10 then you can take Procrit of Epogen and won't have to go off tx. It worked like a CHARM for me - after a few weeks it was tolerable and after a few months I have NO problems at all. Back up to almost 15.
If you can really monitor it...you shouldn't have any problem. While the anemia is horrible horrible horrible it DOES PASS. Knowing that is one of the biggest reasons people quit tx - helped me to realize that it would be worth it to fight through it. Now that I did I am like THANK GOD I didn't quit just because of that!
:)
Definitely remember the lotion. If you moisturize beforehand a bit maybe you will never get it at all! I should have been signing myself AlligatorGirl for the past few months let me tell you!
Debby
Thanks so much for the always good advice, yous guys are great and I decided to treat. If my HGB gets to low I may have to stop tx, but I will try . Also nygirl the thread you posted about rash, and how gold bond medicated triple action cream worked on you in 3 days will be helpful to alot of people, and I for one will keep that in mind in case I get the rash. I just started a notebook with helpful advice like yours and others to help me with sides, etc.
Thanks again all,
Bob
Thanks again all,
Bob
First, I don't know anything about thalassemia and how it affects or doesn't treatment.
That said, as a stage 0, you shoul be in absolutely no rush to make a decision, regadless of what your med team says.
If you're uncomfortable -- feeling pressure one way or another -- still have concerns -- then step back, do some more reading, consult with another doctor or two and then make an intelligent decision on how to proceed. Again, NO RUSH.
If indeed, ribavirin is a problem for your type of anemia, hopefully newer treatment without riba are not too far away. BTW most people do not need supplemental iron with Procrit but not sure how that fits into thalassemia.
Hope things work out.
-- Jim
That said, as a stage 0, you shoul be in absolutely no rush to make a decision, regadless of what your med team says.
If you're uncomfortable -- feeling pressure one way or another -- still have concerns -- then step back, do some more reading, consult with another doctor or two and then make an intelligent decision on how to proceed. Again, NO RUSH.
If indeed, ribavirin is a problem for your type of anemia, hopefully newer treatment without riba are not too far away. BTW most people do not need supplemental iron with Procrit but not sure how that fits into thalassemia.
Hope things work out.
-- Jim
No matter WHAT the situation nobody is NOT scared to death when we start treatment you know? We are all a very big bunch of babies no matter of Thalessemia(sp?) or not.
You ARE going to make it through tx. You are very LUCKY in that you are a 2 with so little damage to your liver you know? Thal or not I would trade shoes with you in a minute to get the info that you have instead of mine!
Keep THAT in the front of your head when the nerves come in. Keep telling yourself I am LUCKY I can kill these stupid idiot bugs in me BEFORE my liver is shot to sh*t! I am lucky I am one of the easier genos! I am lucky that in a few months I am going to be posting "I AM UN-D!!!"
you are going to be fine...for some reason I just know it!
:) Debby
You ARE going to make it through tx. You are very LUCKY in that you are a 2 with so little damage to your liver you know? Thal or not I would trade shoes with you in a minute to get the info that you have instead of mine!
Keep THAT in the front of your head when the nerves come in. Keep telling yourself I am LUCKY I can kill these stupid idiot bugs in me BEFORE my liver is shot to sh*t! I am lucky I am one of the easier genos! I am lucky that in a few months I am going to be posting "I AM UN-D!!!"
you are going to be fine...for some reason I just know it!
:) Debby
Hi all,
I have a team of three drs. and a nurse ready to start tx,I'm just worried. I wish I knew someone who has Thalassemia anemia and went through tx. It would make me feel better. I'm geno 2B-stage 0: grade 1, HGB 11 and still waiting on more results. Thanks to all, and I won't give up. I just hope I can finish the tx and my HGB does not drop to low.
Bob
I have a team of three drs. and a nurse ready to start tx,I'm just worried. I wish I knew someone who has Thalassemia anemia and went through tx. It would make me feel better. I'm geno 2B-stage 0: grade 1, HGB 11 and still waiting on more results. Thanks to all, and I won't give up. I just hope I can finish the tx and my HGB does not drop to low.
Bob
Look for posts from 'Couldn't think of a nickname', 'Wassabi Pea', and 'AZgirl' - I think they each might have some info.
I have seen other posts and maybe in the archive section as well from people with Thalessemia (sp?).
If you doctor is for treatment don't let any excuse convince you to stop. I am brain dead and can't remember your stage and grade and stuff (I don't know how people in here can remember everything that they do!!!).
This sounds like a really important question and personally I would ask for a second doctors opinion. while in here everyone is so unbelievably wonderful....nobody in here knows ALL of your details like the doctor does, you know?
At some point I have to believe that doctors know what they are doing?
I go to mine tomorrow then will seeeeee?
If you doctor is for treatment don't let any excuse convince you to stop. I am brain dead and can't remember your stage and grade and stuff (I don't know how people in here can remember everything that they do!!!).
This sounds like a really important question and personally I would ask for a second doctors opinion. while in here everyone is so unbelievably wonderful....nobody in here knows ALL of your details like the doctor does, you know?
At some point I have to believe that doctors know what they are doing?
I go to mine tomorrow then will seeeeee?
I noticed they approved a new drug called Revlimid for Transfusion anemia. I don't know if something like this would help non transfusion anemia. Just thought I would pass it along.
Ron
Ron
I'm not sure, but can check after the first of the year to see if any have and what the outcomes were.
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