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Transplant anti-rejection medications. What's your advice?
Transplants | Last Active: 5 days ago | Replies (362)Comment receiving replies
Hi, @azdan99. Wow! Your message of 19 years on the immunosuppressant meds, mycophenolate and tacrolimus, are an inspiration for me!
I had a liver and kidney transplant in 2009, and if my math is correct, that is 12 years for me on mycophenolate and tacrolimus. I also used to take prednisone , because that is what my doctors prescribed according to the current research at the time. Like @athenalee, I used to ask about my medications. One year I decided to stop asking, and that is the year that my doctors told me that they wanted to take me off the prednisone. I was surprised and asked them, "Why now". They said that research indicated that for some patients, the prednisone could be stopped. I was in the 'could be stopped' category.
@azdan99, I am happy to be like you - rejection free with a healthy (transplanted) kidney. I am also, happy that my transplant team prescribed my medications according to the research that related to my current and underlying conditions. @athenalee, I commend you and I thank you for continuing to share relevant /reliable research and information in e transplant discussions. We all benefit.
@athenalee, What is your purpose in wanting to change medications?
Will you post a follow-up after you have your appointment?
Replies to "Hi, @azdan99. Wow! Your message of 19 years on the immunosuppressant meds, mycophenolate and tacrolimus, are..."
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I’ve had several infections over the past six months and an ongoing sore throat, along with peripheral neuropathy, chronic muscle pain, and tremors. The first two symptoms I believe may be caused my Mycophenolate, but could be from Sjogren’s Syndrome. My neuromuscular doctor believes the later three are caused by a combination of Sjogren’s, having undiagnosed PBC and liver disease for a number of years, and Tacrolimus.
In mid-February, I’m seeing a Rheumatologist at Lahey, which is my transplant medical center and who supposedly knows about Sjogren’s. So, I’m hoping to get some sort of coordinated care going as all of my symptoms continue to worsen. Unfortunately, many of the treatments for neuropathy interact with Tacrolimus and, one of the few drugs for control of Sjogren’s does as well. Mycophenolate is another drug used for Sjogren’s, however, and it’s certainly doing nothing. So, honestly, I don’t know, but I’m just hoping for some help.