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Transplant anti-rejection medications. What's your advice?

Transplants | Last Active: Apr 1 4:58am | Replies (320)

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@deb25

Does Sirolimus cause you any bad side effects that you did not have with tacro? I think tacro has caused peripheral neuropathy in my feet and legs. I want to switch to Sirolimus. Do you have to take cellcept and prednisone?

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Replies to "Does Sirolimus cause you any bad side effects that you did not have with tacro? I..."

@deb25, I noticed in in your comment the mention of tacrolimus and some of the other common medications that are prescribed for transplant recipients. I take tacrolimus, cellcept, and I used to take prednisonefor my liver and kidney transplant in 2009. I have had no serious side effects with those meds. Since I have no experience with Sirolimus, I would like to share this information - Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

Hi . I got the same numb feeling on leg foot and thigh . But its slowly getting less am 3 months post kidney transplant. We need to be patient I think . I have been told it can take up to 6.months plus to get back to normal. Hope this helps 🙏

I would recommend that you speak with your transplant doctor about your concerns. My peripheral neuropathy symptoms continued to get worse, after first developing tremors and numbness about two months after my transplant.

I was sent to a neurologist and a neuromuscular doctor. Liver disease and two autoimmune diseases contribute to my PN, however, the doctor believes that Tacrolimus, in my case, is a primary contributor. However, everyone’s experience with our medications are different.

I’m seeing my liver doctor in February to discuss switching to another immunosuppressant. I can’t take prednisone, so she has been reluctant to switch me off Tac. I’m going to also see a rheumatologist and neuromuscular doctor at my transplant hospital to try to better coordinate my treatment.

@deb25 I think it's fairly individual if you need to take other pharmaceuticals along with the basic immunosuppressant like sirolimus. I did take a small dose of prednisone for quite a while (I'm more than 5 years post-transplant) but this past year they finally tried taking me off of it and things went fine so now I just take sirolimus. I haven't taken Cellcept since sometime during my first year post-transplant, before I was switched to sirolimus.

I have had no problems since my transplant other than the creatinine caused by tacrolimus so what they are doing seems to be working perfectly.
JK