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

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@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 think that you had a kidney transplant. And so I want to jump in with my experience.
I had a simultaneous liver and kidney transplant: 2 organs, 1 surgery, 1 donor . I also was prescribed prednisone along with my Tacrolimus and Cellcept. The prednisone dosage was gradually lowered over time, but I remained on a 5mg daily dose. After hearing so many negative comments about prednisone, I also began to ask about it. The answer to my inquiry was interesting, - and I think that it demonstrates the differences that are required for our individual medical needs. The liver team had a different opinion than the kidney team. (Yes, I have 2 transplant teams). The best answer was given by the doctor in the kidney transplant department. He said that the research, at the time, showed that 'for me' there was a benefit to staying on the low dose of prednisone. That was what I needed to hear!
For approximately 8 years I remained on 5mg daily prednisone without any complications or decreased bone changes. In 2017, during my annual evaluation, I was told that I could taper off the prednisone because of some new related research.
It can take a while for your body to adjust to a new normal 'for you' lab pattern. How long ago was your transplant? What is the opinion of your transplant nephrology team?

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@rosemarya

@nimalw, I think that you had a kidney transplant. And so I want to jump in with my experience.
I had a simultaneous liver and kidney transplant: 2 organs, 1 surgery, 1 donor . I also was prescribed prednisone along with my Tacrolimus and Cellcept. The prednisone dosage was gradually lowered over time, but I remained on a 5mg daily dose. After hearing so many negative comments about prednisone, I also began to ask about it. The answer to my inquiry was interesting, - and I think that it demonstrates the differences that are required for our individual medical needs. The liver team had a different opinion than the kidney team. (Yes, I have 2 transplant teams). The best answer was given by the doctor in the kidney transplant department. He said that the research, at the time, showed that 'for me' there was a benefit to staying on the low dose of prednisone. That was what I needed to hear!
For approximately 8 years I remained on 5mg daily prednisone without any complications or decreased bone changes. In 2017, during my annual evaluation, I was told that I could taper off the prednisone because of some new related research.
It can take a while for your body to adjust to a new normal 'for you' lab pattern. How long ago was your transplant? What is the opinion of your transplant nephrology team?

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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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@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 🙏

Jump to this post

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

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@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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@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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@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

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

Jump to this post

@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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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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@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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