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Do any transplant patients here have experience with Sirolimus?
I am currently taking cyclosporine but am concerned about potential long term affects such as diabetes and nephrotoxicity. I can't take tacrolimus due to neurological issues. Web searches found the following info about the use of sirolimus. To me it's sounds like a good alternative but I am interested if other people's experiences.
Low nephrotoxicity: Unlike calcineurin inhibitors like cyclosporine, sirolimus has minimal toxicity towards the kidneys. This makes it advantageous for kidney transplant recipients, as it helps preserve renal function in the long term.
Reduced risk of malignancy: Sirolimus has anti-proliferative and anti-angiogenic properties, which may reduce the risk of developing cancers, especially skin cancers and lymphomas associated with long-term immunosuppression.
Synergistic with other immunosuppressants: When used in combination with cyclosporine or tacrolimus, sirolimus exhibits a synergistic effect, allowing for reduced dosages of the calcineurin inhibitors and minimizing their side effects.
Potential anti-aging effects: Emerging research suggests that sirolimus may have longevity-promoting effects by inhibiting the mTOR pathway, which is involved in aging processes. However, more research is needed to confirm optimal dosing and safety for this purpose.
Steroid-sparing regimens: Sirolimus can be used in steroid-free immunosuppressive regimens, reducing the adverse effects associated with long-term steroid use.
Efficacy in preventing acute rejection: In clinical trials, sirolimus in combination with other immunosuppressants has demonstrated effective prevention of acute rejection episodes in kidney transplant recipients.
While sirolimus offers advantages, its use is also associated with potential side effects such as hyperlipidemia, myelosuppression, impaired wound healing, and increased risk of certain infections. Therefore, careful monitoring and individualized dosing are essential when using
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Hi! I am 19 years post transplant and have been on Sirolimus since day 1. Dosage has been changed at times....sometimes to 3mg. daily to alternating 3mg. on 1 day and 2 mg. the next and so forth, to 2mg. daily...etc., etc. I am currently taking 1mg. daily as my Mayo neph wants my level below 5. It does have some side effects but I don't complain (much) as, along with Prednisone and Myfortec, seems to be doing the job. What side effects? Well, coupled with the prednisone, I bruise like a bad apple. Minor inconvenience. The other possible side effect is AVN (a vascular necrosis) which I was unlucky to get, resulting (over the years) in 2 hip replacements, a knee replacement and a shoulder. But, still, you do get past it, do the physical therapy and it's still better (in my opinion) than dialysis...or worse. Hope that helps and good luck!
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3 ReactionsI am 18 years post pancreas transplant. The transplant center I used had a protocol to avoid steroids. They said that Prednisone was to be avoided and that there were better choices than Cyclosporine. I was put on Mycophenolate (Cellcept) and Tacrolimus (Prograf). The center explained that 2 forms of immune suppression was recommended. Early on my post transplant labs revealed that my white blood count was tanking. The center thought that the Mycophenolate was to blame and I was switched to Sirolimus (Rapamune). This lasted a long time. At about 7 years post transplant I was diagnosed with an incisional hernia. When I had the hernia repaired the Sirolimus was discontinued because there was a concern that it could prevent wound healing. I was switched to Aza ——(sp?) aka Imuran. At the follow up appointment for the hernia surgery I was told that the Imuran could be discontinued. I wasn’t told to resume the Sirolimus. When I inquired about that from my transplant coordinator I was told that I probably no longer needed as much immune suppression. I am currently on just Tacrolimus 1.5 mg in the am and 1 mg in the evening. I have biopsy confirmed Tacrolimus toxicity to my kidneys. I have switched transplant centers and am currently inactively listed for kidney transplant. I have stage 4 CKD. My eGFR is not quite bad enough for active listing. I’ve also been unsuccessfully looking for a living kidney donor. I hope to have a preemptive kidney transplant before dialysis becomes a necessity. In retrospect I miss Sirolimus. If I was going to be on one immune suppressant only I would rather it be Sirolimus than Tacrolimus.
Hello. My liver transplant will b 4 yrs this October. I am on tacrolimus ever since day 1. As of today symptoms are starting. The one I see the most is legs and feet are numb some tingle but numb and legs hurt bad when I put light pressure on them. I had two emg test by the neurologist and second test proved my condition was getting worse. Yes I bruise very easy. And dr. Is always watching kidney blood numbers. I am in a corner? Any suggestions. T.U.
Dear gratefullbob.
U sound like a doctor. Your info was awesome.i have been on tacrolimus since liver transplant going on 4 years but having leg numbness and feet neurologist feels it is the medication. Anyway my liver Dr wants to switch me to sirolimus. I was once on it and had very bad soars in my mouth. I hope that does not happen again but your infanksormation was great. Th