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

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.

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?

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

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.

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.

I was loosing my hair before the transplant and meds. It did not get worse with tacro.

I am 5 months post liver transplant and my hair was falling out in clumps leaving major bald spots I went to my dermatologist who recommended using K18 shampoo and conditioner (bought on Amazon) and vegamour hair oil twice a day my hair is still coming out but not as bad and I am beginning to see hair growth in the bald areas. Hope it helps

All meds have side effects including immune suppressants/ anti rejection meds. I am 19 years post pancreas transplant. I had issues with Mycophenolate but no problems with Tacrolimus. I also had Sirolimus and Azithioprine sp? for awhile. If you are having intolerable problems with you meds ask for help from your transplant team (and be grateful for your transplant)!

Hi, @skjones. When I read your message of June 28, you were having concerns about your rising and lowering tacrolimus levels. And, I will add that I can understand because I do the same thing whenever anything is not "my normal" in any of my labs. I have recently remembered a conversation on Connect where members shared that they had noticed a change in tacrolimus levels when the pharmacy switched to a different supplier. I also remembered that I had received a notice, once from the Mayo Specialty Pharmacy (where I get my medications) when they switched. I don't recall that my level was affected for that, but it might be comething for you to consider.

Is it possible for you to contact your pharmacy and check your prescription/manufacturer history?
How are you feeling? Have you, or will you be seeing your nephrologist soon?