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

Hi Rosemary:
I learned about test called FREE CELL DNA from my hepatologist. I further inquired and requested to have the test. Since it has only been perfected for Kidney TXP's I was unsure what the possibilities could be for Liver TXP.
I requested the test called ALLOSURE in January and a draw was taken for it. A few days later I received a call from ALLOSURE in CA telling me they would undertake a trial for me if I was willing. I will begin in a few days at .5mg TAC BID and if all goes well in three months I will be taken down to ,05mg a day with the possibility of NO medication by late 2025 if all goes well.

@abider, Good Morning and Welcome from another Mayo Liver transplant recipient! I am happy to meet you here on Connect and I am interested in your participation in the clinical trial.
My transplant is actually a simultaneous liver and kidney transplant from an annonymous deceased donor at May Rochester in 2009 as a result of PSC. My immunosuppressant medications (Mycophenolate and Tacrolimus) have been working well for me now for 15 years with minor dosage adjustments that are guided by my labs and occasional increase of side effects.
While I was reading about your clinical study and your desire to reduce your tacrolimus, I am curious as to why or how you became involved in this study. Did you initiate this or did your transplant team refer you? Were you having bothersome side effects or are you looking to the future possibilities? Might I ask if you have any co-existing condition that would benefit from the potential switch? I look forwar5d to heating more of your experience with liver transplant.

I was transplanted (LIVER) at MAYO Jacksonville 12-08-2020. I have had no issues. I am currently on 1.5mg of TAC a day. I am beginning a clinical trial through ALLOSURE to reduce my medication in the next year to .5mg a day or possibly 0.

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

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.

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

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.

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

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

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?