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.

Dik Glass , liver transplt 8/4/11 | @dglass4040 | 6 days ago

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

benedict66066 | @benedict66066 | 6 days ago

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

my44 | @my44 | 6 days ago

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 | 6 days ago

Thank you!

my44 | @my44 | 6 days ago

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

You're welcome.

Rosemary, Volunteer Mentor | @rosemarya | 6 days ago

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?

benedict66066 | @benedict66066 | 6 days ago

Hi Rosemary,
I am about to receive a living donor transplant, possibly within 6 months. I am interested in eplet matching and how to reduce rejection drugs.

Rosemary, Volunteer Mentor | @rosemarya | 6 days ago

In reply to @benedict66066 "Hi Rosemary, I am about to receive a living donor transplant, possibly within 6 months. I..." + (show)

@benedict66066, I had to look this up as it is unfamiliar to me.
Here is information about eplet matching at Kidney For Life
- What is the Kidney for Life Initiative?
Kidney for Life is an initiative of the National Kidney Registry that utilizes eplet matching technology to improve donor-recipient matching for living donor kidney transplants.
https://www.kidneyforlife.org/about-kidney-for-life/
This patient section shows the participating Transplant Centers and contact information:
- Kidney for Life
https://www.kidneyforlife.org/for-patients/
Where will you receive the transplant? Did you find it on the list?

benedict66066 | @benedict66066 | 6 days ago

In reply to @rosemarya "@benedict66066, I had to look this up as it is unfamiliar to me. Here is information..." + (show)

Thanks so much! I have seen this material. I wondered if anyone had a transplant using a low eplet mismatch number.
I appreciate it.

Karen B. | @bram7747 | 3 days ago

In reply to @hello1234 "Hi @bram7747 😊 It is very nice to meet you! It sounds like your husband received..." + (show)

Yes to heart transplant & Tac. He was only on Mycophenolate a couple months. They stopped that 1 as his heart biopsies were +2 rejection. They upped his Tac instead. After a year or so docs lowered the Tac back to 3 mg from 4. He will be 12 years out in May & it’s been a nightmare. He had Rt. Mid cerebral artery stroke in recovery, so lots of on going issues with that. Sees Dermatologist 4-6 Wk intervals. Always has squamous carcinomas. Lots of Mohs & freezing. He was put on Rapamune with goal to quit Tac. It has a lower cancer profile. As he was building up, he was still on Tac, reducing weekly. Couldn’t get through it as the 2 drugs together even for a few weeks, caused dangerous bleeding episodes. Building new, while reducing old. I hope for u that if your doc decides to try a different drug there is a better way to transition. I wish you the very best with your Kidney & any Medicines that could reduce cancers. Keep me posted.