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.

Rosemary, Volunteer Mentor | @rosemarya | Jan 13 12:49pm

In reply to @benedict66066 "Friends, is there a subgroup for kidney transplant patients? Thank you!" + (show)

@benedict66066, Welcome to Connect! I am glad that you have joined us.
Are you a kidney patient or are you a caregiver for a loved one? What are you interested in regarding kidney transplant?

my44 | @my44 | Jan 13 12:31pm

In reply to @benedict66066 "Thank you!" + (show)

You're welcome.

benedict66066 | @benedict66066 | Jan 13 12:22pm

Thank you!

my44 | @my44 | Jan 13 11:50am

In reply to @benedict66066 "Friends, is there a subgroup for kidney transplant patients? Thank you!" + (show)

HI, @benedict66066.
Yes there is. If you go to the top of the page and in the Search box type in the words "kidney transplant" and press enter, you will find many threads on the subject. Hope that helps.

benedict66066 | @benedict66066 | Jan 13 11:40am

Friends, is there a subgroup for kidney transplant patients? Thank you!

Dik Glass , liver transplt 8/4/11 | @dglass4040 | Jan 13 8:22am

I had a mayo Jax liver trp in 2011
Changed up all my immunosuppressants by 2013 to Everolimus, no more steroids, kidney function came back and now living with stage 4 metastatic prostate but
Controlled by mayo Rochester Docs

hello1234 | @hello1234 | Jan 12 6:23am

Hi @bram7747 😊
It is very nice to meet you! It sounds like your husband received a heart transplant and was taking Tacrolimis. Was he also taking Mycophenolate or another immune suppression med with the Tacrolimis? Is his main problem with Everolimus the thinning of his skin or is he experiencing other side effects? I am a kidney transplant patient on Tacrolimis and Mycophenolate and I am having lots of Mohs surgeries and freezing so we are now discussing a possible med change too.

Rosemary, Volunteer Mentor | @rosemarya | Jan 11 9:12pm

In reply to @bram7747 "Yes, my husband takes 3mg’s tac, heart transplant 2013. Couple years out he began getting squamous..." + (show)

@bram7747, I want to welcome you to Mayo Clinic Connect and I want to share this discussion with you:
- Anyone dealt with multiple squamous cell surgeries post transplant?
https://connect.mayoclinic.org/discussion/multiple-squamous-cell-surgeries/
.
You will be able to meet transplant recipients @hello1234, @ckomis, and also @danab who has a heart transplant. They are sharing their experiences with squamous cells and treatment. I know that they will be happy to welcome you and learn with you.
@bram7747, How is your husband getting along with the medication change?

Karen B. | @bram7747 | Dec 21, 2024

In reply to @jolinda "@contentandwell I did know that some people switch meds so your experience with creatinine gives me..." + (show)

Yes, my husband takes 3mg’s tac, heart transplant 2013. Couple years out he began getting squamous cells head face & neck, arms. He has had 8 mohs procedures & more freezing than we can count. He tried sirolimus for this reason but could not make transition. His skin is very thin & bleeds a lot. Still on prednisone. Needed to build up on sirolimus before dropping Tac, bleeding became dangerous. He is on a 6 week cycle with dermatologist. He has started getting lesions near his eyes, so now has an eye doctor on board who lasers those.

taco | @taco | Dec 21, 2024

In reply to @melbourneaussie69 "Prednisolone caused me to become quite violent and aggressive, I have been put on the lowest..." + (show)

My nephrologist does not think that a low (5 mg) dose of Prednisone can cause mood symptoms and will not lower the dose, but I think it interacts with Tacrolimus which they will also not lower. The psychiatric side effects of the two medications combine (especially for those with pre-existing conditions). This is my theory, and I am looking for studies of these two medications regarding these side effects.