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This and That and Talk - My Transplant

Transplants | Last Active: Aug 14, 2024 | Replies (1677)
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@jackie421blfdgurl

HI Rosemary this isJackie checking in. How are u? Well my ankles are swollen from time to time, Saw my liver doctor a week ago, she is changing my blood pressure meds cause this pill u can
have swollen feet or legs, as far as the numbness in feet and legs she is taking me off tacrolimus
and putting me on sirolimus which I am nervous that is the pill I was n from hospital and ended with mouth soars in my mouth for 23 days she took me off and the soars cleared up.but I need blood wk once a week to test the numbers on sirolimus, and it has a lower protection for the
surpressed immune. oh well.just wonder if anyone else is experiencng this. Thanks girl. Have a
great day..Hot Hot in N,J,

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Replies to "HI Rosemary this isJackie checking in. How are u? Well my ankles are swollen from time..."
Rosemary, Volunteer Mentor | @rosemarya | Jul 23, 2024

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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