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

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.

@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.

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.

Please keep the community informed of how the trial goes if you are allowed. This sounds amazing. I wonder the possibilities if it is successful.

I advise listening to your medical team..

I take the same- 1 mg every 12 hours.

I have been teduced to 0.5 mg, twice a day, after 10 years. I am now 21 years out from heart transplant. I also take mycophenolate 1000mg twice a day. Never had issue with meds or rejection. Truly blessed!

That’s the first I have heard. 1mg every 12 hours is definitely a blessing. It’s Been 6 years post liver transplant for me and taking 6mg a day. I guess I have long ways to go.

Hi, @mwai. I want to welcome you to Connect. I see that you received your liver transplant 6 years ago. My transplant was 15 years ago. I am glad that you have joined the conversation. I have, over the years, been reminded that our medications and dosages are adjusted according to our individual needs. I still have routine labs drawn every 3 months so that my transplant team can monitor me from a distance. And some have needed adjustment over the years.
Are your medications causing any unwanted side effects that has you wondering about your dosage? Are you being monitored by local doctor or transplant team?

Hello Rose, thank you for reaching out to me, indeed my transplant team monitors my dosage every 2 months. My side effects are very minimal thus far.