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Rapamune with pancreas transplant
MrsCora01 posted:
Does anyone know anything about the success of using Rapamune with a pancreas transplant? Before my pancreas, I had the kidney from my cousin and was doing very well on myfortic and rapa. After the pancreas tx I was put on prograf again because apparently there had been a study suggesting that pancreases (pancreI? LOL) don't do that well with rapa. Unfortunately my creatinine is going up (as it did before on the prograf) and I suspect that I am getting damage from it as I did before. In my perfect world I would be on rapa again and not the prograf. Anyone have any thoughts or know anything about switching to rapamune with a pancreas? Thanks. Cora
John-SKPT responded:
Every patient is different of course, and having two different donors for two different organs might potentially complicate matters. But I had a simultanous K + P transplant and the prograf toxicity was getting to the kidney. So after a LOT of prodding from me, my nephrologist and a few others, the transplant team agreed to try Rapamune (cautiously). I was hoping that I could stabilize the serum creatinine at 1.9 or 2.0 but the result was actually far better than I had expected: the serum creatinine has been stable between 0.9 and 1.2 since the end of 2005 when we started rapamune. Blood glucose has been essentially inchanged from the days on prograf to the days on rapamune. So I'd say keep asking and keep getting more information. It might not be a good thing for every patient, and you certainly don't want to take any chances with the pancreas. But to my view, anything that limits the toxic effects on the kidney is probably worth a carefully monitored try. It's been a great drug, at least for this one patient. Good luck.
MrsCora01 responded:
Thanks John. I needed that. I had a really rough time on hemo, so if it is a choice between doing what's best for the pancreas and doing what's best for the kidney, I'm going to save the kidney. Going back on an insulin pump is far easier than going back on dialysis. Of course I'd love to keep the pancreas, but I need the kidney more desperately than I need the other organ. Cora
John-SKPT responded:
I think that if the team goes slowly and carefully, it will be possible to try going to Rapamune without posing a huge risk to the pancreas. When they swapped me over, it was back to getting labs done every few days, then weekly, then every two weeks, and eventually back to monthly lab work. That gave them the chance to spot any changes early enough to modify doses. One other thing that seemed a bit odd: I started Rapamune while still on a full dose of Prograf. It took about a week or so to build up the Rapamune level in the blood before they cut out the prograf. So that was a little spooky, being significantly over-immunosuppressed, but it worked out well in the end.

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