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Transplant anti-rejection medications. What's your advice?
Transplants | Last Active: Apr 1 4:58am | Replies (320)Comment receiving replies
So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness? Or does it abate or perhaps even go away once one may be weaned off the drug that caused it at some point? My mother never took any of the drugs you mentioned as she never received a transplant. Her neuropathy was caused by diabetes and she eventually ended up in a wheelchair due to no feeling in her feet. Is that the future with neuropathy as a side effect of an immunosuppressant drug that a transplant patient has to take for a lifetime?
Replies to "So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness?..."
@saundrella,
As Rosemary stated peripheral neuropathy is definitely not a transplant related or caused ailment. It may be a side effect of some meds and this may or may not be a lasting effect. But, many transplant recipients have few or different side effects of the meds and do not have PN. And, if they do get tremors or related PN symptoms these often go away.
For me, I have three autoimmune diseases, one of which, Sjogren’s, did manifest after my transplant and is causing peripheral neuropathy and other issues. Tacrolimus is believed to be aggravating this, as is the extended time I went without a diagnosis of liver cirrhosis and PBC, which had caused some PN in my feet and liver cirrhosis.
I think it important that you share your concerns with your transplant team. They are the best people to address your particular issues and concerns.
Saundrella, I recommend that you follow the Neuropathy group and join others talking about neuropathy and neuropathy related to diabetes.
Click this link to see all discussions: https://connect.mayoclinic.org/group/neuropathy/
Here are links to specific discussion in the group:
- Neuropathy due to long untreated diabetes https://connect.mayoclinic.org/discussion/neuropathy-2/
- Diabetic Neuropathy progressing? https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/
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Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.