Transplant anti-rejection medications. What's your advice?

As Rosemary says, wow! Very inspiring. Thank you for sharing.

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.

I’ve been on anti-rejection meds for almost 28 years. First kidney transplant in 1994. I started on Sandimmune (Cyclosporine) and prednisone. Switched to Cellcept a few years later, then to Mycophenolate a few years after that. First transplant started to fail about 4 years ago and I was lucky enough to get a second transplant in 2019. Now. I’m taking Mycophenolate, Tacrolimus and Prednisone.

Side-effects have been acid reflux, skin issues, low magnesium, high blood pressure and recently hair loss. But I’m 69 now, so some of these could be age related.

My dosage of the anti-rejection meds frequently changes depending on lab results. So make sure you don’t run low on them. The dosage could go up and you don’t want to run out.

My advice is to follow your doctor’s orders and always tell them when something is bothering you, no matter how insignificant you think it might be. Try to get some exercise a few days a week, even if it’s just walking, and stay hydrated.

I'm in my 8th year post transplant. Kidneys on Tac. have been failing for several years. Creatinine level has run to .275. Stable now. Imuran will not repair the damage but I think I've gone into a holding pattern. No dialysis yet.

Fantastic. This is what I am hoping for as well . Can you remember your tacrolimus level when they reduced to 1mg ?????

Yes from 6mg I was brought down to 4mg I'm only 2 months after transplant. Dr said no change for a few months at least it's too risky to reduce the dose he says

Hi has anyone experienced urine retention in the Bladder after kidney transplant with elevated creatnine???

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?

I am post heart transplant 19 years. The entire time I have been taking mycophenolate and tacrolimus. Doses have been adjusted a few times. I have not experienced rejection nor kidney stress. My doctor monitors with labs. At 75 yo, I feel good.
I am not recommending these drugs, just telling my experience.

I’m hoping to reduce my Mycophenolate dose when I see my transplant doctor next. So, of course, I’m reading up on options and issues. I found this awesome article! It’s long, but an easy read and very interesting. I’ve attached it. But here’s the link, as it has the links to the questions section - https://emedicine.medscape.com/article/432316-overview#showall