1. < Transplants

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.

azdan99 | @azdan99 | 14 hours 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.

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skjones | @skjones | 1 day ago
In reply to @rosemarya "@skjones, I would like to welcome you to Connect! I see from your profile that you..." + (show)
@rosemarya

@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?

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

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | 2 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?

REPLY
1 reply
skjones | @skjones | 3 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?

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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)
@gphetteplace

Hi! Thank you for starting this discussion. The weirdest effect I’m having is nocturia, which apparently can be a side effect of the Tacrolimus. I haven’t slept through the night in the two months since transplant since I have to go to the bathroom four times a night, even if I stop drinking at 6:00pm. Any one else have that problem? Does it get better?

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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.

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krsti | @krsti | Feb 9 8:58am
In reply to @rosemarya "@krsti, I always choose to believe my Mayo Transplant Team over and above anyone else! I'm..." + (show)
@rosemarya

@krsti, I always choose to believe my Mayo Transplant Team over and above anyone else! I'm happy that this was an option for you.
I can understand how you must be enjoying your new diet, and I feel quite certain that it is why you are now struggling to control your weight. I don't have celiac, but I remember how good everything tasted to me after my transplant. Plus there was no more nausea. I'll never forget the piece of buttered toast that I had for my first breakfast, and it was heavenly! Thanks for the memory:-)
Kristi, I had my transplant at the Rochester Mayo. Where did you get your transplant?

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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!

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roxylulu22 | @roxylulu22 | Feb 5 8:28am
In reply to @rosemarya "@roxylulu22, This is fantastic! Thanks for sharing. In addition to your words of hope, I invite..." + (show)
@rosemarya

@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?

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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!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 3 8:04am
In reply to @roxylulu22 "The same thing happened to my husband. Thankfully, his kidney transplant cured all his blood pressure..." + (show)
@roxylulu22

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.

Jump to this post

@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?

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1 reply
roxylulu22 | @roxylulu22 | Feb 1 8:33am
In reply to @beracha "Hi. My husband had the cough from Lisinopril. It is most common side effect. They took..." + (show)
@beracha

Hi. My husband had the cough from Lisinopril. It is most common side effect. They took him off and his cough stopped. U r not alone.

Jump to this post

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.

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1 reply
beracha | @beracha | Feb 1 5:36am
In reply to @sassytx63 "I just found this "Connect" site tonight, and I have been learning so much, lol. I..." + (show)
@sassytx63

I just found this "Connect" site tonight, and I have been learning so much, lol. I never thought to connect the getting-up-during-sleep to my Tacrolimus. I mean, I've had kids,and thought it was just part of aging. 🙄
I had a liver transplant 8 years and 2 months ago. I was able to dutch the Phoslo and Cellcept the first year. About 6 months post-transplant, I developed a microcellular ductopenic rejection, and received 5 doses of Thymol. I'm here to tell you the "'roid rage" is real! Because I had so many doses of steroids to manage the rejection, I developed steroid-induced diabetes. I finally got taken off Prednisone last week in order to help my blood sugar numbers. But Tacrolimus also raises blood sugar. I was on 4mg Tacro daily and 2mg of Sirolimus daily for over 8 years. Last week my Tacro was lowered 1mg and I'm now taking 4mg of Sirolimus daily. I love getting the medical monograph papers when I get my prescriptions, and Sirolimus is black-boxed. It also said, "Do not take Sirolimus if you've had a liver transplant ". It made me laugh, because I trust my medical team.
Apparently, my immune system is so robust that they really have to stomp it into submission!
I've was so terrified of covid in the beginning. I took 2 shots and 1 booster, but I'm not taking any more shots. I actually had covid last October. Had a headache day 1, nausea/vomiting day 2, nasal congestion day 3, and I lost my senses of smell/taste on day 4 which only lasted 4 days. That's it, no coughing or shortness of breath at all. I realize that since I don't often work outside the home I'm not exposed to a lot of people. I'm so very grateful to be alive!
Question: has anyone had to take Lisinopril for high blood pressure, and then have to stop it because of an allergy? I've never been allergic, or sensitive, to anything in the past. Except, now Lisinopril. My PCP told me to stop taking it 2 months ago because it would occasionally cause face and tongue swelling. And the coughing I thought was due to dust (I live in a rural area) was also due to a Lisinopril sensitivity. Who knew?
I apologize for the rambling, but this is my first experience with a transplant support group. Thank you.

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Hi. My husband had the cough from Lisinopril. It is most common side effect. They took him off and his cough stopped. U r not alone.

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