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.

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
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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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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nimalw | @nimalw | Jan 24, 2022
In reply to @contentandwell "@nimalw I was on prednisone for about 4.5 years and everything was very stable. Plus, it..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 24, 2022

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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JK | @contentandwell | Jan 24, 2022
In reply to @nimalw "Thanks jK I shall try nagging this week!!! When I see the doctor. Hes a nice..." + (show)
@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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1 reply
nimalw | @nimalw | Jan 24, 2022
In reply to @rosemarya "Hang in there! You are doing great and you are especially to be commended for your..." + (show)
@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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nimalw | @nimalw | Jan 24, 2022
In reply to @athenalee "@nimalw, It’s great you monitor your labs! The calcineurin inhibitor drugs—Tacrolimus, Cyclosporine, etc. can interfere with..." + (show)
@athenalee

@nimalw, It’s great you monitor your labs! The calcineurin inhibitor drugs—Tacrolimus, Cyclosporine, etc. can interfere with glucose metabolism.

When my glucose levels began rising, I definitely was nervous. I doubled down on my diet, eliminated refined sugars and reduced simple carb foods…pasta, potatoes, etc. My glucose levels have reduced back into mid-normal levels.

Apologies if you’ve seen the attached from my previous postings, but if not, it’s an excellent look at potential side effects of our medications. Also, be sure to speak with your team nutritionists if you haven’t. They’re a great resource.

Athena

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Thanks Anthea.

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athenalee | @athenalee | Jan 24, 2022
In reply to @nimalw "My main concern is its starting to elevate the blood sugar levels which I never had..." + (show)
@nimalw

My main concern is its starting to elevate the blood sugar levels which I never had before

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@nimalw, It’s great you monitor your labs! The calcineurin inhibitor drugs—Tacrolimus, Cyclosporine, etc. can interfere with glucose metabolism.

When my glucose levels began rising, I definitely was nervous. I doubled down on my diet, eliminated refined sugars and reduced simple carb foods…pasta, potatoes, etc. My glucose levels have reduced back into mid-normal levels.

Apologies if you’ve seen the attached from my previous postings, but if not, it’s an excellent look at potential side effects of our medications. Also, be sure to speak with your team nutritionists if you haven’t. They’re a great resource.

Athena

Shared files

Livertransplant-part2 (Livertransplant-part2.pdf)

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 24, 2022
In reply to @nimalw "Hi Rosemary. Yes this also what I hear from a few who are on pred long..." + (show)
@nimalw

Hi Rosemary. Yes this also what I hear from a few who are on pred long term
My kidney transplant is now just under 4 months . Pred is the only drug that gives me side effects. I will follow the doctors advise and accept and take it as it comes
Thank you 🙏

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

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