Do any transplant patients here have experience with Sirolimus?

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!

I 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

@gratefulbob

Hi there,

I'm responding to your post because I saw the term "myelosuppression". I believe this is the condition my husband is currently suffering from. He is about 4.5 years into his kidney transplant that he received from Mayo Az, and we are from California.
His blood counts started to drop in the past few months. First it was just a very minor drop in hemoglobin, then his other blood counts started to lower as well. At the same time his blood counts were slightly dropping, his Everolimus trough level was missing target range too. So our home neph said to increase the Everolimus dose, from 0.75 mg to eventually 1.25mg am 1.0mg pm, to hit trough range of 4-7. The increase in Everolimus dose gradually cause blood counts to further reduced and the hemoglobin hit 10 and going lower by July 2026. Long story short, our home neph contacted Mayo Az (we do not have direct access to Mayo Az transplant neph directly) and was told to check for Parvo Virus and CMV all came back negative. Working with UCLA hematologist now and he run other labs to test for leukemia and lymphoma - call came back negative. My husband did a bone marrow biopsy last week and now waiting for results to see what it shows because all the other labs our hematologist/oncologist don't anything BUT that the lab results are consistent with bone marrow suppression. At this point, I'm not sure what anti-rejection medications Mayo Az transplant can switch my husband to. Our home neph says he cannot make a determination on how to adjust/modify the anti rejection medications. I have called over to Mayo Az kidney transplant and spoke to one of the nurse coordinators. She said for us to talk to our home neph about it and have him call Mayo Az. It's very frustrating because i wish we can talk to Mayo Az nephrologist directly - not to go over our local neph but he has said he cannot help in this situation. Just takes so much longer to get a response.
So as of now, my husband has paused Everolimus and put on prednisone instead. Hematologist is running CBC and his counts look better, but, he is waiting to get the biopsy result to see what it shows. At this point I'm very stressed because i'm not sure what other anti rejection drugs they can put him on. The reason he was switched to Everolimus was because Myfortic was giving me CMV recurrence, so he cannot go back to that.
Other minor side effects from Everolimus is edema - his feet were a bit swollen but tolearable and he does take Vasepa to combat hyperlipidemia.
I have searched for the term "myelosuppression" under kidney transplant but I don't think I got many hits. Please share if you know any other information. TIA!