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

Thank you. I had a kidney transplant 7/21/2020 at Jacksonville FL Mayo

@ronnorth, Iwant to add my Welcome to Connect and to say that I understand your concern about your current situation. I am so sorry to learn of your situation and the hospitalization, However, I feel confident that by being in the hospital, you are getting the best immediate care and treatment to protect your liver.

I had my transplant in 2009, so this touches me deeply and it is something that rings an alarm in my head whenever I hear the "R" word (rejection).
I have not had any rejection episodes, so I have located some Support Discussions that you might find interesting and where some other members have shared their experiences. I invite you to jump in anywhere with a question or comment.

- Transplant Rejection news
https://connect.mayoclinic.org/discussion/rejection-news/
- Liver Rejection after 15 years
https://connect.mayoclinic.org/discussion/liver-rejection-after-15-years/
- Prayer Request (this is from a patient who was actually going thru rejection at the time of the post)
https://connect.mayoclinic.org/discussion/prayer-request/
@ronnorth, Are you still having labs 2x week? What has your transplant team had to say about all of this? Do they know what is causing this? How do you feel?
Ron, Since using all upper case letters indicate anger, would you please check to be sure that you have turned off the Capital lock on your keyboard. Thanks.

Something you can consider. Minoxidil 2..5mg is a pill I take daily for thinning hair which is both genetic and a result of Letrozole and other cancer treatments. It takes 6 months to a year for it to make a difference. Same ingredient that is in Rogaine. It has worked for me and no side effects.

Hi, @splendrous. I had thinning hair during my time with liver disease and transplant. I can understand how you must have felt when you found a product that helped you!
I don’t know anything about the pill that you have suggested, but I want to remind everyone that a transplant recipient should always consult with the transplant provider before introducing any vitamin, supplement, medication because it could alter the strength of immunosuppressant medications.

@splendrous- Are you a transplant recipient? What organ? How long ago?

No transplant. I had breast cancer and lost my hair from chemo and the pill
i take for 8 years causes hair to thin.

Thank you for sharing and congratulations on your 8 years! ❤️
Have you participated in the Breast Cancer Support Group?

I think my comment somehow got in the transplant group vs the breast cancer support group. Not sure how I did that. Will be more careful next time.

I appreciate your willingness to share from your experience. We are all patients and we need each other.

I been in Tacrolimus( generic Prograf) for 24 years and 2 liver transplants. I tried another med for a month and was allergic to it, broke out in hives. There was another med I was on for about a year with the Tac which began with a "M". Sorry I don't recall it full name but I think it had 2 parts to its name. Plus I was on some steroid for about 6 months after each transplant. The steroid made me into a Dr. Jekyll and Mr. Hyde. I hated it. My hair thinned a bit and I felt sore all over, and recall being tired. Today I have no odd feelings like I used to have. But I also promote the lowest dosage of Tac you and your doctors feel safe with since you could experience organ rejection. I never had a reject with either transplant. Today I take 3 mg of Tac daily, 1mg morning, 2mg night. I keep asking to see if I can reduce it more to just 2mg daily instead of 3. With my 1st transplant I was on .5mg twice a day near the last couple of years. My second transplant was a result of an odd genotype 3 of Hep C that I had which only the new meds that came out in 2015 that finally cured it. I tried the old interferon/ribavirin treatments years ago but they only reduced the viral load during my 1st transplant, so the liver would keep longer. I was buying time waiting for new research of Hep C would fine a final cure. Today I have a Neurologist, my second one, to treat pheriferial neuropathy supposed caused by the Tac. I tried some other immune surpressants but they could not track the blood levels and I allergic to one of the other meds. I had to go back to Prograf since the med was referred to in its development days as FK 506 and that is what the blood test is called today.

Thanks Bob for this information and congratulations on 24 years post-transplant. I am about 2.5 years post liver TX and have also been advocating for trying to reduce my tacrolimus to the lowest possible dosage. I’m trying to see if I can reduce the medications so as to hopefully minimize the long-term effects on my health (such as the development of neuropathy). I was on 4mg/day for about the last 18 months - with tac levels in the 4-6 range. Then suddenly with my August labs, my tac levels spiked to 8.2. My team reduced my medication to 1.5mg 2X per day, and ordered follow-up labs in 2 weeks. Interestingly, my tac levels actually increased further to 9.2 - even higher than previously. So the team reduced my medication to 1mg 2X per day. The most recent bloodwork showed tac levels of 3.2. They have requested additional labs in another 2 weeks.

I’m pleased that my medication has been reduced in half, but am concerned about the sudden change in tac levels - after 18 months of stable results. I’m trying to understand what might have caused this and if anyone else, including you with 24 years of experience, has had a similar experience. Thanks