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

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.

@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.

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

@ronnorth welcome to Mayo Clinic Connect. Sorry that you experienced a rejection especially at the 1 year anniversary mark. It is good that everything turned out fine. I’m sorry that you’ve been having some other problems the past year and a half. I had a pancreas transplant and I’m not that familiar with specific liver transplant issues. Hopefully other members will chime in with ideas for you. You are not alone.

@skjones welcome to Mayo Clinic Connect. What organ did you have transplanted?

JUST FOUND THIS GROUP.
ON 04/09/2009, I RECEIVED A LIVER TRANSPLANT. ON THE ONE YEAR ANNIVERSARY, REJECTION OCCURRED. I WAS BOMBARDED WITH PREDNISONE. PILLS CONTINUED FOR AN EXTENDED PERIOD OF TIME. EVERYTHING TURNED OUT FINE. A YEAR AND A HALF AGO, MY ALK PHOSPHATASE BEGAN RUNNING IN THE 200s. IN FEBRUARY OF 2024, I GOT A TAVAR HEART VALVE INSTALLED. THIS INCLUDED USING A BLOOD THINNER. IN JUNE, PROBLEMS WITH MY LIVER SHOWED UP. HOSPITALIZED JUNE 30TH, RELEASED JULY 4TH, PUT ON 40MG PREDNISONE, INCREASED TACROLIMOUS 6MG. THROUGH THE MONTH OF JULY, BLOOD TESTS TWICE A WEEK. SO FAR WHITE BLOOD COUNTS UP, ENZYMES UP. ANY IDEAS? DON'T WANT TO LOSE THE LIVER

I just found this group. I am learning so many new things. Thank you everyone for sharing your thoughts and comments. Bless you all and God bless all of us who get to work with wonderful people at Mayo’s hospitals and their wonderful staffs. I hope you have a wonderful day!

This is interesting. My labs are done at a local lab and I never have been asked when I took my envarsus xr last though it's always 8 am the day prior. Great information. Thank you for this suggestion.

You are so right! I live on a peninsula in. The UP with a very small health center (part of their larger system 125 miles away) and the phlebotomist(s) are quite unfamiliar with transplant/immunosuppressant folks (only one remembers me after being up here 10 years) and unless I specially tell them to mark down when my last dose of Sirolimus was before the draw, it gets sent to Mayo, Rochester without letting them know when and how much my last dose was. Very frustrating. So right, while. I used to get my hackles up when one of the Transplant Team nurses would question me as to when & how much I'm taking of one of my meds...but then I'm like "hey Mayo folks are smart but not clairvoyant, and if the date/time isn't clearly stipulated on the accompanied paperwork (which their mail-in kits clearly instructs), how would they know.
Thanks for your comments and sending best wishes for you.
(PS...just got home from Gift of Life last night where we stay while at Mayo...love that place!)

I have had 2 liver transplants, one 2000 and the other in 2017. The whole time I took Prograf/Tacrolimus except for a trial month on sirolius. I was allergic to it so I went back to Tacrolimus. My levels were higher in the beginning now I have cut back. My levels were higher years ago but much lower now. My tests typically are a little below or on the lowest numbers in the normal range. I have never had an organ rejection over 24 years however, my current doctor team thinks the Tac may be the reason for my kidney damage and pheriferial neuropathy in my feet and ankles. My advise is to try and get your Tac levels around the low normal area. But, some people have organ rejection and need higher doses. Talk to your doctor about possible side affects of your medication and Google these things so you can talk about things intelligently with the medical staff.