Aa
More questions about anemia..
I know I have bothered you wit these questions before, but I just need some input on how to interpret the info from my doctor and nurse.
The thing is, that I have alredy had two transfusions (I'm in week 11 on triple tx with Vic) because of low hgb at 8.1 the first time and at 8.5 the last time I got the transfusion.
My doctor says that he won't give me any rescue drug for anemia (Procrit/Epo) because he mesured my erythropoietin level and it is at 144. He says that it should normally be between 4.3-29 and that my body already is producing a lot of this hormone so rescue drugs won't help to stabilize the hgb. Do any of you have any similar experiences?
I just can't cope with the fact that they want me to have transfusions every second week or so. It's maybe nonsense but it scares me to get blood severalt times through tx.
We talked about dose reducing on the Riba but the doc wasn't to interested in that either, because he says I'm already on small dose because of my weight (800 mg per day).
They took some other tests on Friday to see if there can be any other causes to the anemia (lack of B12 etc) but haven't got tjose results yet.
Any others who had to get transfusions regularly through tx? Is it just me, or would you also feel a bit stressed about getting blood?
I would really like to solve this anemia problem with rescue drug, if it only could stabilize the hgb to f.ex. 9 I would be happy, as long as it's not dangerous.
Some thoughts on this or experience?
Thank you.
The thing is, that I have alredy had two transfusions (I'm in week 11 on triple tx with Vic) because of low hgb at 8.1 the first time and at 8.5 the last time I got the transfusion.
My doctor says that he won't give me any rescue drug for anemia (Procrit/Epo) because he mesured my erythropoietin level and it is at 144. He says that it should normally be between 4.3-29 and that my body already is producing a lot of this hormone so rescue drugs won't help to stabilize the hgb. Do any of you have any similar experiences?
I just can't cope with the fact that they want me to have transfusions every second week or so. It's maybe nonsense but it scares me to get blood severalt times through tx.
We talked about dose reducing on the Riba but the doc wasn't to interested in that either, because he says I'm already on small dose because of my weight (800 mg per day).
They took some other tests on Friday to see if there can be any other causes to the anemia (lack of B12 etc) but haven't got tjose results yet.
Any others who had to get transfusions regularly through tx? Is it just me, or would you also feel a bit stressed about getting blood?
I would really like to solve this anemia problem with rescue drug, if it only could stabilize the hgb to f.ex. 9 I would be happy, as long as it's not dangerous.
Some thoughts on this or experience?
Thank you.
Thanks for all the answers.
Crigger and Brianmo: yes, I will discuss reducing the Riba because I don't feel comfortable with having all the transfusions throughout the tx. I hope it will solve the anemia without making me detectable again.
Advocate 1955: I didn't realize how it would affect me to have the transfusions. I know that it is as safe as it can be but I still feel very worried about having to do this every second week. After the last transfusion I have abdominal pain and it looks like I have swelling in the face and the stomach aswell. I don't like the idea of having problems because of this.
Sentinel13: I realize rescue drugs is not an option for me. It will be either transfusions or reducing meds to complete this tx for me.
Rockymoe: you are tough and I wish I could be more comfortable with the transfusions. But I just can't. It stressed me out..
Beeblessed: congratulations on finnishing tx!! Your story brings hope and I really hope you get SVR! I understand you had a bumpy ride through tx. Keep us posted :)
Crigger and Brianmo: yes, I will discuss reducing the Riba because I don't feel comfortable with having all the transfusions throughout the tx. I hope it will solve the anemia without making me detectable again.
Advocate 1955: I didn't realize how it would affect me to have the transfusions. I know that it is as safe as it can be but I still feel very worried about having to do this every second week. After the last transfusion I have abdominal pain and it looks like I have swelling in the face and the stomach aswell. I don't like the idea of having problems because of this.
Sentinel13: I realize rescue drugs is not an option for me. It will be either transfusions or reducing meds to complete this tx for me.
Rockymoe: you are tough and I wish I could be more comfortable with the transfusions. But I just can't. It stressed me out..
Beeblessed: congratulations on finnishing tx!! Your story brings hope and I really hope you get SVR! I understand you had a bumpy ride through tx. Keep us posted :)
Hi Bovary,
I had 1 transfusion, RIBA reduction and PEG reduction. That helped but not enough to my doc's liking, so they authorized Procrit. I took 1 injection at full strength, and a 2nd at half the dose.
My docs were NOT pushing Procrit because it is another drug with it's own set of sides, and it does not work for everyone. I was one of the fortunate ones. The PEG reduction was for 1 week, then went back up to almost a full dose, and remained that way until the end. The RIBA was drastically reduced for 1 month, then increased slightly but I could not handle it (as reflected in my labs), so I was reduced again for the rest of tx. At week 21, I was still UND.
Through everything, I think the dose reductions kept me upright the most. The transfusion did help, but my docs did not want to do that multiple times either.
Wishing you the best,
Bee
I had 1 transfusion, RIBA reduction and PEG reduction. That helped but not enough to my doc's liking, so they authorized Procrit. I took 1 injection at full strength, and a 2nd at half the dose.
My docs were NOT pushing Procrit because it is another drug with it's own set of sides, and it does not work for everyone. I was one of the fortunate ones. The PEG reduction was for 1 week, then went back up to almost a full dose, and remained that way until the end. The RIBA was drastically reduced for 1 month, then increased slightly but I could not handle it (as reflected in my labs), so I was reduced again for the rest of tx. At week 21, I was still UND.
Through everything, I think the dose reductions kept me upright the most. The transfusion did help, but my docs did not want to do that multiple times either.
Wishing you the best,
Bee
I am on week 30 triple tx with Vic. I have had two transfusions so far. Once I drop under 10 I crash fast even on the Procrit. Myself I have been glad to have the transfusions. You feel better faster.
Hi Bovary: I've taken both Procrit and Epogen. Both Procrit and Epogen are Erythropoiesis-Stimulating Agents (ESAs). Apparently, for whatever reason, you body is already producing way too much ESA (many times more than the normal range). So, assuming your EPO test results are accurate, the typical Procrit & Epogen rescue drugs do not sound like a solution for you.
Procrit & Epogen are very powerful drugs that can cause blood clots (and much worse). Check out http://www.epogen.com/ (if you haven't already). I emphasize with you, but you probably want to stop thinking about Procrit or Epogen as a solution to your low hemoglobin. Best Regards, GB
Procrit & Epogen are very powerful drugs that can cause blood clots (and much worse). Check out http://www.epogen.com/ (if you haven't already). I emphasize with you, but you probably want to stop thinking about Procrit or Epogen as a solution to your low hemoglobin. Best Regards, GB
I can't really answer the question about transfusions because my husband hasn't needed a transfusion with any of his 3 treatments. But I do know that the most important thing is to get through treatment, so if he were in your situation, I would encourage him to get the transfusions if that's what his doctor recommended. The protocol for managing anemia has changed a bit from the old practice of using Procrit to Riba dose reductions and transfusions. Blood is very carefully screened now, and I'm sure that the benefits outweigh the risks.
Advocate1955
Advocate1955
My Riba was reduced from 1000 to 800, my weight 114. If you look at the information that comes with Riba it suggest it be reduced if HGb below 10. It was the best thing I did to get through treatment. It was a suggestion from my doctor.
It seems like they could reduce your Ribo dose to aleast 600mg . My doc put me on 600 for a brief time then went back up to 800mg. I was on 1200mg. I also took procrit. I was at 8.3.... now I am at 10.5 and I feel like a new women.
They are also checking for vitamin D. But I guess I don't have lack of this vitamin because I'm taking a daily dose of fish oil (with Omega 3 and vitamin D).
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