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

Thank you for posting this. I am a kidney transplant recipient (7 months ago) and I started experiencing serious and worrysome hair loss less than a month ago. I have been told by transplant team there is not much to do besides over the counter remedies.

First of all, the medications and dosages I take may not be right for you or anyone else.
I am 77 years old, had a heart transplant at Banner University in Tucson, AZ in 2003 (21 years ago) and am doing very well for my age. After transplant I was taking a number of meds(and dosages) in accordance with the protocol established by the transplant center. Included in the meds was tacrolimus and mycophenolate, in dosages that were very different from what I am taking today. At the time, tacrolimus was categorized as experimental for adult heart transplants. These meds have been very successful in my post transplant treatment. I have never had an issue taking these meds. I hope this gives you some guidance about transplant meds.

I not sure my reply went thru. I hadn't finished when it disappeared. I'll check tomorrow. Oh well lol

@skjones, I would like to welcome you to Connect! I see from your profile that you received your kidney transplant in 2010 at Mayo Clinic! I received my simultaneous liver and kidney transplant at Mayo Rochester in 2009. I have had some ups-and-downs with my tacrolimnus level over the years, but not as big of a jump as you are experiencing. And , just this past spring, I had a jump (higher than my normal) trough reading that was accompanied with extreme trembling, anxiety, and lack of concentration that were affecting my daily life. My dose of tacrolimus was lowered, and extra labs indicated that my body was performing well at that level. I was approved for a lower trough range at my recent annual evaluation in May. This was a surprise to me, because my level has been stable for many years!

You are not alone - Here is a discussion where you can meet and talk with others who are sharing their tacrolimus experiences:
- Tacrolimus blood levels: Do yours vary?
https://connect.mayoclinic.org/discussion/tacronlimis-blood-levels/
Is there any discussion about a lowered tacrolimus dose? Are you having side effects?

I take 2 mg Envarsus XR, 100 mg Azathioprine and 5 mg prednisone daily at 8 am. 4 years since my Kidney transplant. For the past 6 months my tacrolimus starts rising above target level. It finally settled at 5.9 three months ago. Just had it retaken for quarterly nephrologist appointment and it’s back up to 9.3. What causes the level to rise? I found out green tea green tea makes it rise so I stopped that completely and thought that’s why it normalized again but here I am 3 months later and my tac rose to 9.3 again. Help. Any ideas what I’m doing wrong?

Yes it does get better. I couldn't sleep well until they lowered Tac level. I started with sleep study. I think u r too close to transplant. Sleep nap whatever it takes to heal ur body. U will have sleep. I do breathing exercises before bed to lower my heart rate.

Thanks so much for the support. I have trouble with self-control when it comes to good food. I don't pile on the junk food. But yep, the carb additions have not helped! lol!!! I got my transplant at the Phoenix campus. They were so great. My first great food memory is a cheeseburger with a real bun!

His transplant took place on February 23, 2023. His sister was a live donor and a perfect match! He is doing so well! The transplant and recovery were textbook perfect and we are enjoying a life free from dialysis and other restrictions that came with it. He had interdialetic hypertension so there were some very scary moments and we felt the "clock was running out" so the transplant was just such an amazing gift. I am so grateful to his sister and she will never really know how much her gift saved him. As we come up on the 1 year kidneyversary we are beginning to get out more and enjoy this gift of life he was given. He continues to eat healthy, watch his protein intake, stay active, and rebuild the strength he lost. He has IgA so the antirejection meds are at a bit higher dosage so there are the side effects of those. He states that he will never feel 100% "normal" like he did before kidney failure but the side effects are manageable and he tolerates the meds fairly well. I will check out the other discussion you recommended. Thank you!

@roxylulu22, This is fantastic! Thanks for sharing.
In addition to your words of hope, I invite you to share in this discussion:
- Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
.
,
When was his transplant? How has life change for you since transplant?

The same thing happened to my husband. Thankfully, his kidney transplant cured all his blood pressure issues so he no longer needs blood pressure meds. But the cough from the lisinopril kept getting worse and worse until he had to go off it. The cough cleared up almost instantly.