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

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Interested in more discussions like this? Go to the Transplants Support Group.

beracha | @beracha | Apr 1 4:58am

In reply to @gphetteplace "Hi! Thank you for starting this discussion. The weirdest effect I’m having is nocturia, which apparently..." + (show)

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.

skjones | @skjones | 5 days ago

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?

Rosemary, Volunteer Mentor | @rosemarya | 4 days ago

@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?

skjones | @skjones | 3 days ago

In reply to @rosemarya "@skjones, I would like to welcome you to Connect! I see from your profile that you..." + (show)

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

azdan99 | @azdan99 | 2 days ago

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.