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.

@amkaplin

I had a kidney transplant 3 years ago and have been taking 3 mgs of Prednisone once a day ever since. My numbers are stable but recent test results indicate that I'm developing Diabetes. I'm not overweight (5' and 107 lbs.) and it appears that my condition is related to the medications that I take. My nephrologist recently reduced my Mycophenolate from 1500 mg a day to 1250 mg. I've read that some Transplant Centers do not use Prednisone because of the side effects. I'm also taking 3.5 mg. of Everolimus. My question is: which medication contributes to a high blood sugar level and what can I do about it.

Jump to this post

@amkaplin I had a pancreas transplant 17 years ago at a center that had a protocol to not use steroids (prednisone) because of the side effects. I believe I had some other steroid med once or twice in an IV infusion early on but never had any ongoing oral steroid meds long term. That was a long time ago. I think newer and better immune suppressants have been developed since then.

REPLY

I have to say I am AMAZED that u had a pancreases transplant and u are going on 17years. It is so wonderful to hear I am in aw how our bodies are able to accept a organ from a donor and it works in our bodies. Congrats again to u.

REPLY
@myfablife

I have to say I am AMAZED that u had a pancreases transplant and u are going on 17years. It is so wonderful to hear I am in aw how our bodies are able to accept a organ from a donor and it works in our bodies. Congrats again to u.

Jump to this post

@myfablife it was my own personal miracle, a true gift from God!

REPLY

God is so good. I am almost 2yrs LT
Again I am so happy for u.😊🦋

REPLY
@amkaplin

I had a kidney transplant 3 years ago and have been taking 3 mgs of Prednisone once a day ever since. My numbers are stable but recent test results indicate that I'm developing Diabetes. I'm not overweight (5' and 107 lbs.) and it appears that my condition is related to the medications that I take. My nephrologist recently reduced my Mycophenolate from 1500 mg a day to 1250 mg. I've read that some Transplant Centers do not use Prednisone because of the side effects. I'm also taking 3.5 mg. of Everolimus. My question is: which medication contributes to a high blood sugar level and what can I do about it.

Jump to this post

I take mycophenolic acid 360mg twice daily and tacrolimus 1.5mg twice a day. I used to take 5mg of prednisone immediately post transplant, but I was, like you, developing diabetes as well as the start of a cataract in the right eye. Even though the dose of prednisone was small, they decided to take me off of that and that’s when I began the mycophenolic acid instead. I had a liver and kidney transplant and I am almost 9 years post transplant.

A frank discussion with your nephrologist and transplant team should lead to a solution for you. I hope all the best, and hang in there.

REPLY

I had been on Imuran since my transplant - 11 years ago - but switched to Myfortic 7 weeks ago. I also take Prograf. The reason for the switch was I was having so many skin cancers and Mohs procedures every year, get worse as the years went on. I think I’m having weird side effects: I’m feeling very spacey, having trouble finding words; my feet and ankles are swelling by mid afternoon; overall lethargy. Has anyone else experienced anything like this? I have sent a message to my team. Thanks and happy holidays!

REPLY

Did you have a kidney or LTP? Also interested after 11 yrs. How much meds do u have to take. I am on celcept Prograf.

REPLY
@myfablife

Did you have a kidney or LTP? Also interested after 11 yrs. How much meds do u have to take. I am on celcept Prograf.

Jump to this post

@myfablife Im on Prograf - and have been since my kidney transplant - and had been on Imuran until this switch to Myfortic. At the time that they changed me to Myfortic, I also doubled my dose of amalodipine for blood pressure. Turns out the amalodipine was causing the swelling, etc. I have gone back to my old dosage and am hoping this will get me back to normal - whatever that is!

REPLY
@myfablife

God is so good. I am almost 2yrs LT
Again I am so happy for u.😊🦋

Jump to this post

I am 2yrs post liver transplant on 13/14th January...overnight surgery.
Am now waiting for a kidney transplant.

REPLY

Hi u had a LTP and now need kidney is that what I am understanding?

REPLY
Please sign in or register to post a reply.