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This and That and Talk - My Transplant

Transplants | Last Active: Aug 14 9:57pm | Replies (1677)

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@rosemarya

Hi, @jackie421blfdgurl. It is good to hear from you!
I'm sorry to read that you had a reaction when you were taking sirolimus once before. I can understand your nervousness. However, it sounds like your liver doctor has a plan to monitor your labs every week so that she can carefully monitor the level and monitor your liver enzymes and any side effects (like the mouth sores). It will be your responsibility to contact her right away if those side effects appear. That way the dose could be adjusted before any problem occurs. She is aware of your previous reaction, isn't she?
Jackie, Sirolimus is a good medication - that is why so many transplant patients are taking it. Each one of us reacts differently to the meds and our transplant doctors are going to work to find the one that works best for each one of us. I think it is a good thing that she is carefully watching the blood pressure meds since she suspects it is causing your swelling.

I want to re-connect you with a discussion where you joined toward the end of the conversion. If you have not already done so, Please look at what others have shared about sirolimus from their experience.
- Do any transplant patients here have experience with Sirolimus?
https://connect.mayoclinic.org/discussion/do-any-transplant-patients-here-have-experience-with-sirolimus/
@gratefulbob, @charlie5454s, @cehunt57, Do you have any experience with Sirolimus that you would share with @jackie421blfdgurl?

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Replies to "Hi, @jackie421blfdgurl. It is good to hear from you! I'm sorry to read that you had..."

cehunt57 here. I had a pancreas transplant (2005). I started with Prograf/Tacrolimus and Cellcept/Mycophenalate. Found out the Cellcept/Mycophenolate didn’t agree with me. I was switched to Sirolimus. I never had any problems with it. I was taken off of it when I had a surgery for an incisional hernia repair (2012). Apparently it was thought that Sirolimus interfered with wound healing. I was put on something else (Immuran sp? I think temporarily). At the surgery follow up, that med was stopped but the Sirolimus was never resumed. I was told that with more time, less immune suppression is needed. Now I am only on Tacrolimus (since 2012).

U are AWESOME
I hope everyone in your life knows u are AWESOME. Thank u. I just can't take the numbness in my feet and legs does not go away. I will try the sirolimus will let u know the progress. I will go to that web site u posted.happy Wednesday