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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Profile picture for desouza @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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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!

REPLY
Profile picture for desouza @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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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

REPLY
Profile picture for JK @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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Profile picture for livertrex @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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Profile picture for JK @contentandwell

@nimalw I was on prednisone for about 4.5 years and everything was very stable. Plus, it was a very small dose so the risk of taking me off it was minimal. The dose had been higher initially but over time it was reduced.
JK

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Thanks JK

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Hi all transplant members. Many of you have had the pleasure of crossing virtual paths with @athenalee. Today Athena is our featured Member Spotlight. I think you'll enjoy @rosemarya's interview with Athena and getting to know more about how she finds balance, enjoys small town living and dancing, cooking and life-long learning. Also note the cameo appearances of @loribmt @hello1234 @estrada53 and others.

– "Learning never exhausts the mind”: Meet @athenalee https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/learning-never-exhausts-the-mind-meet-athenalee/

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Profile picture for nimalw @nimalw

Thanks jK I shall try nagging this week!!! When I see the doctor. Hes a nice man very caring doctor. I think hes anti pred as well

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@nimalw I was on prednisone for about 4.5 years and everything was very stable. Plus, it was a very small dose so the risk of taking me off it was minimal. The dose had been higher initially but over time it was reduced.
JK

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Profile picture for Rosemary, Volunteer Mentor @rosemarya

Hang in there! You are doing great and you are especially to be commended for your proactive thinking and questioning!!! ❤

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Thank you Rosemary. Sickness is a lonely journey no matter how much family around you .

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