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

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

Jackie, our anti rejection medications are prescribed by our transplant teams according to our individual needs. The purpose of the meds is to prevent rejection of our transplanted organs. i think that it is a good idea for you to discuss your concern about dosage with your transplant doctor.
It is not unusual, in fact, it is normal, for you, @athenalee, myself, and others to take different dosages of same and different medications.

During the time immediately after my transplant, my meds were adjusted often, and each dosage change was monitored by a repeat lab. The goal is to have a level of the drug to protect our organs, but not too much.
It is important to take your immunosuppressant meds on the schedule that you and your doctor have established. My schedule, the one that we decided works best for me, is 8AM and 8PM every day. I use an alarm on my iphone as my reminder.

I hope that you and your doctor will have an informative and helpful conversation. I comment you for your desire to be an active participant in your post transplant care.

@athenalee.thanks for input...I will text my Dr. AS to why such high
Dose on tac. Hope your 4th was a good one

You take 6 mg of Tac in am and pm? My transplant was in August 2020, I now take 3 mg of Tac am and pm, it was lowered in April from 4 mg am and pm. However, Mycophenolate dosage was doubled to 1,000 am and pm.

I’m very strict with taking both on a completely empty stomach. I’ve read that’s the best way to metabolize it fully. I’ve also done thorough research into all herbs, tinctures, etc. that interfere with its metabolism, which includes many common herbal supplements unfortunately. So, I take vitamins, Omega3, and ALA for neuropathy and that’s it.

I have terrible tremors, although my liver doctor doesn’t think they’re due to Tac. But, I want to keep reducing it and see. All the anti rejection meds are so harmful to our bodies, so I hope Sirolimus works for you and you can reduce Tac!