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.

l0lag0lag0b3 | @l0lag0lag0b3 | Jul 17, 2022
In reply to @livertrex "Am at 7 months post transplant and I am on .5 every 12 hours." + (show)
@livertrex

Am at 7 months post transplant and I am on .5 every 12 hours.

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That is Terrific, You a have good match !
I am at 1.5mg (1 am, .5mg pm) my wife was the donor.

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desouza | @desouza | Aug 2, 2022
In reply to @contentandwell "@estrada53 I too am on 5 mg of prednisone. It has not caused any problems that..." + (show)
@contentandwell

@estrada53 I too am on 5 mg of prednisone. It has not caused any problems that I was aware of except for the bruising on my arms, until I discovered that it had caused my osteoporosis.
The bruising is called purpura and it can be helped by applying a topical (approved by my transplant team). The transplant dermatologist at Mass General prescribed it for me. It is often used for acne too! It toughens your skin a bit to prevent the bruising. There is also an OTC cream made especially for purpura called DerMend. That helps too.
Did your weight gain happen immediately? I am really struggling with my weight currently and have been since last summer, which would have been almost 3 years post-transplant. I suspect I will always have to take prednisone because my blood numbers (platelets especially) run low and prednisone helps with that.
If you seek the prescription cream, be aware that it is expensive and not covered by insurance, but if you use the app GoodRx you can find it priced fairly reasonably. I haven't used it for a while, I primarily didn't want those bruises limiting me in getting a dress for my son's wedding last August.
JK

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Thank you for your information. I also have the “púrpura” and I didn’t know what it was. My doctor told me it could be low platelets , but now after liver transplant my platelets are normal and I’m still having my arms with these bruises . I already order the DerMend!

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desouza | @desouza | Aug 2, 2022

I had a liver transplant 5 months ago, so the beginning I was on Tacrolimus which I had a really bad reaction on my Kidneys(Creatinine, bicarbonate etc..) after a month my doctor switch it to everolimus , I had “ mild side effect” and I didn’t want to change again for 2 reasons:
-1) it’s better for who had cancer and 2) I was scare to run out of options.
I guess all give you some side effects and we have to see which ones you can live with

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 2, 2022
In reply to @desouza "I had a liver transplant 5 months ago, so the beginning I was on Tacrolimus which..." + (show)
@desouza

I had a liver transplant 5 months ago, so the beginning I was on Tacrolimus which I had a really bad reaction on my Kidneys(Creatinine, bicarbonate etc..) after a month my doctor switch it to everolimus , I had “ mild side effect” and I didn’t want to change again for 2 reasons:
-1) it’s better for who had cancer and 2) I was scare to run out of options.
I guess all give you some side effects and we have to see which ones you can live with

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@desouza, Congratulations an your 5 month old liver transplant. I don't know if our paths have crossed, but I want to be sure to extend a welcome to Mayo Connect.
I have a liver and a kidney transplant and have not experienced purpura, and wonder of it might be related to medications as your seems to suspect with the medication change. Did you have this before transplant?

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desouza | @desouza | Aug 3, 2022

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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1 reply
JK | @contentandwell | Aug 3, 2022
In reply to @desouza "Hi, First of all Thank you for the “welcome”. Yes I’m new here. I had these..." + (show)
@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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amkaplin | @amkaplin | Sep 13, 2022

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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4 replies
myfablife | @myfablife | Sep 14, 2022

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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hello1234 | @hello1234 | Sep 14, 2022
In reply to @amkaplin "I had a kidney transplant 3 years ago and have been taking 3 mgs of Prednisone..." + (show)
@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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 14, 2022
In reply to @amkaplin "I had a kidney transplant 3 years ago and have been taking 3 mgs of Prednisone..." + (show)
@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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