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

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

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

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.

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’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.

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

Holding pattern is a good sign . You are long way from dyalisis . Wish you all the best I know it's hard on the mind I battled with CKD for 20 yrs

Good morning @tjdog 😊 Wow, you definitely have years of experience with your kidney transplants. It sounds like your first kidney functioned well from 1994 to 2017, so 20 years, right? That's wonderful! Did you have a living donor?
I am a one year post kidney transplant patient on MMF and Tac too.
Congrats on your new transplant in 2019! My question is, what has been your experience with protocol kidney biopsies? How often did you have them and were they helpful for "catching" signs of rejection or problems or did your docs use other tests to diagnose? Thanks @tjdog

Good Morning, @nimalw. Welcome to Mayo Connect with a special Congratulations on your recent kidney transplant!
My combined liver/kidney transplant occurred 12 years ago, and I needed dialysis before my transplant because of acute kidney failure along with end stage liver failure. I can only remember immediately feeling better upon waking from the surgery , and relieved that I did not require anymore dialysis. I remember that my Creatinine level was normalized right away because my kidney doctor 'danced' into my room while singing "0.8" over and over. I am only one of many patients, so my situation is not representative everyone.
As for bladder retention, I did not experience any. I know this because when the catheter was remover, and I was on my own to pass urine, the nurse performed ultrasound bladder clearance scans. These are also performed annually as part of my routine annual evaluation.
At 2 months post transplant, and at any time and every time you are concerned/or just have questions, I encourage you to communicate with your transplant team. Did you transplant at Mayo? Are you registered on the patient portal? It is the perfect place to ask non emergency questions.

When do you have a follow-up with your transplant team?

Dear I am in Asia . Here we go direct to Nephrologist weekly visits now it's by weekly . I had a mild elevated creatnine in my last test scan was done kidney was fine but bladder retention was there so the doctor thinks it could be the retention that's causing the creatnine spike. He put me on urimax feel much better after taking it . Next test this Saturday. Hope it has settled down . I did pre emotive transplant never did dyalisis. I feel the drug dosage is high . I feel really good just finished golf. Hate creatnine spikes !!! I geuss who likes it !