General
Clinical trials
October 19, 2021
in General
Hi,
Has anyone taken part in clinical trials for transplant meds? It is surprising how few new drugs there are for us out there! I am still on tacrolimus and azathioprine - both very old drugs
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I have been on Tacrolimus for 11 years and I have no side effects from it. It may be an old medication but it works well.
Transplant Patient
@Showtime tacrolimus is a great drug, that is why we are all on it! I have been on it for almost 13 years now and my side effects including narrowing of the vessels in my kidney which eventually will cause the kidney to fail - that is a known effect of tac. Other people suffer side effects such as T2D, hyper tension, hair loss, tremors and vicious headaches...
20 years on Prograf and Cellcept and prednisone. I don’t notice side effects, but my bones (hips and back) are a wreck. Probably prednisone.
Transplant Patient
@Sharon44 clearly from prednisone! I was adamant to never go on that drug due to its consequences, but many transplant pts do spend time on it!
Transplant Patient
Right after my transplant I was on prograf twice a day (immediate release Tac), cellcept, prednisone and ursodial (I had issues with my arteries being so small and collapsing). They did a trial and switched me from prograf to advagraf a while ago, and even from that small switch I've noticed much better results. I'm off of the cellcept and prednisone, and am on a minimal dose of the ursodial.
Personally I would be wary about being in a clinical trial, just since my case has been so fragile and even the tiniest of changes has impacted me drastically. It would all come down to a case by case basis I guess, and personal consultations with my doctors about pros and cons. Right now I feel very well managed with my drugs and don't really want to risk anything