Aa
Prograf vs. Rapamune
Hello,
I was diagnosed with Epitheliod HemangoEndoThelioma in both my liver and possibly my lungs. The nodules in my lungs are too small to biopsy and have not changed size in over a year and a half. I was on the transplant list for a year. I was transplanted Feb. 19, 2014. I am 34.
I was originally prescribed Prograf at 12 mg AM/12 mg PM and Rapamune 3 mg AM. My current dose is Prograf 3 mg AM/ Prograf 3 mg PM and Rapamune 4 mg AM. The intent is to convert me to 100% Rapamune because of the nephro-toxicity of the Prograf and my young age and because of the anti-cancer properties of Rapamune. Data, while horribly limited, has shown Rapamune's anti-cancer properties have had success against vascular tumors such as mine so EHE, in this case chronic, is part of the cancers Rapamune affects (some cancers it has no effect).
However, Rapamune has several concerns such as FDA termination of Rapamune in 2009 and a 2011 published article in Hepatology that indicates Rapamune shouldn't be used in stable liver transplants without being in conjunction with a second imunosuppressant. While Rapamune extends life of transplant patients by 14% (citation not in front of me), the authors did not differentiate liver and kidney patients, but instead collapsed their sample. Unfortunately, I can find little else that helps me make a decision. I haven't been able to find recent data to help me with this decision.
Are there other side effects I am missing from either suppressant? What about side effects that result from the combination of this regimen? I need to make the most educated decision. Since I was in a science PhD program, I'm well-versed in pubs, methodology and statistics so any information you provide doesn't need to be filtered.
Logically, my doctor is in the top 5 of life expectancy in the U.S. and is well-versed in EHE. Deferring to to the doctor would be the most reasonable approach, but this just isn't a decision I can't research.
I was diagnosed with Epitheliod HemangoEndoThelioma in both my liver and possibly my lungs. The nodules in my lungs are too small to biopsy and have not changed size in over a year and a half. I was on the transplant list for a year. I was transplanted Feb. 19, 2014. I am 34.
I was originally prescribed Prograf at 12 mg AM/12 mg PM and Rapamune 3 mg AM. My current dose is Prograf 3 mg AM/ Prograf 3 mg PM and Rapamune 4 mg AM. The intent is to convert me to 100% Rapamune because of the nephro-toxicity of the Prograf and my young age and because of the anti-cancer properties of Rapamune. Data, while horribly limited, has shown Rapamune's anti-cancer properties have had success against vascular tumors such as mine so EHE, in this case chronic, is part of the cancers Rapamune affects (some cancers it has no effect).
However, Rapamune has several concerns such as FDA termination of Rapamune in 2009 and a 2011 published article in Hepatology that indicates Rapamune shouldn't be used in stable liver transplants without being in conjunction with a second imunosuppressant. While Rapamune extends life of transplant patients by 14% (citation not in front of me), the authors did not differentiate liver and kidney patients, but instead collapsed their sample. Unfortunately, I can find little else that helps me make a decision. I haven't been able to find recent data to help me with this decision.
Are there other side effects I am missing from either suppressant? What about side effects that result from the combination of this regimen? I need to make the most educated decision. Since I was in a science PhD program, I'm well-versed in pubs, methodology and statistics so any information you provide doesn't need to be filtered.
Logically, my doctor is in the top 5 of life expectancy in the U.S. and is well-versed in EHE. Deferring to to the doctor would be the most reasonable approach, but this just isn't a decision I can't research.
MEDICAL PROFESSIONAL
i wish you good health and luck
Thank you very much.
MEDICAL PROFESSIONAL
i would definitely dramatically lower your prograf dose. often we leave people on very small doses of prograf (such as 0.5mg BID) just to offset any possibility of rejection. We have several patients who are maintained on rapa monotherapy without a problem. rapa at times can be difficult to tolerate--i agree with the current recommendations being given to you. rapa is otherwise safe
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