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?

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@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.

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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.

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

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@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.

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

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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.

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@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.

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@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.

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@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.

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hi, @amkaplin. I am happy that you asked this question about meds contributing to your high blood sugar. I am recipient and I have always been told that each of us comes to transplant with a unique set of health issues and backgrounds. I don’t know if there is a definitive answer to your question about which med is affecting you. Have you raised this question to your doctor? He/she was s going to be the best one to give you answers about you.
In the meantime, I am interested in the experiences that other members are sharing! I think that by sharing, we can go to our provider with a sense that we are not the only patient with questions-kind of like assurance that we are validated to ask questions. Connect is a place to share experiences and to support each other. When will you see doctor again? Was this a sudden change or gradual over time?

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@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.

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Hi @amkaplin 😊
Congrats on your kidney transplant! What was the cause of your original kidney failure? I think many times transplant patients are given a low dose of Prednisone to prevent the original cause from hurting the new kidney. Is that why you are taking Prednisone?

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Hi,
When I had my LT 2yrs ago I developed steroid diabetes from the prednisone as soon as they took me off prednisone my sugar is now normal.
I am not familiar with Everolimus. I take 1mg tac q12hrs 729 mg myfortic.
Compared to your medications. But kidney maybe different from LT.
I hope u find out what’s going on..

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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.

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@desouza

Hi,
First of all Thank you for the “welcome”. Yes I’m new here.
I had these bruises before and I was told could be because low platelets (it was around 90) After my liver transplante it went up to normal (250) but I’m still having it mainly in my arms. I heard that could be from the prednisone (steroids) but I stop taking it a month ago.
And now I was told could be a skin problem, perhaps because the anti-rejection meds (low immune system)?!?
it was the first time that I read an explanation for the problem - púrpura.
It was very helpful!

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@desouza @rosemarya
Purpura is generally not a condition to be concerned about, it's pretty benign, just unsightly. It happens mostly with fair-skinned people because our skin is thinner and aging makes it thin even more so the slightest bump can cause it. Steroids do exacerbate it because they tend to thin your skin also.

This is a fairly good article about it:
https://www.healthline.com/health/senile-purpura

I prefer the term "actinic purpura" over "senile purpura". Senile has a definite definition that does not apply to everyone who is aging. As my daughter said when she heard the term "senile purpura", "how rude!".
JK

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