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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.

JK | @contentandwell | Jan 23, 2022
In reply to @nimalw "Thanks JK. I wonder if we can ever get off prednisone? Looks like it's a life..." + (show)
@nimalw

Thanks JK. I wonder if we can ever get off prednisone? Looks like it's a life long drug sadly .

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@nimalw I did get off of prednisone. I was on a very small dose and I sort of nagged my transplant team about getting off, telling them it had turned my bones into swiss cheese. They finally relented and let me discontinue it and YAY! all was fine.

I have no idea if I had other side effects from it but I do think it has affected my bones because I now have somewhat advanced osteoporosis and my endocrinologist thought that was probably the cause for it being as bad as it is. My sister is 3 years older than I am, less active, and she only has osteopenia. I think the familial connection would suggest we would be more similar without the interference of a drug.
JK

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jan 23, 2022

@nimalw & JK I had a pancreas transplant in 2005. The transplant center I went to had a protocol to avoid steroids. I was originally on Cellcept & Prograf (Mycophenolate & Tacrolimus). I had issues with Cellcept and it was changed to Rapamune (Sirolimus). When the change happened I remember being brought into clinic for an IV infusion of a steroid medication (I’ve forgotten the name). It was a one time thing and I’ve not had prednisone or any other steroid before or since then.

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nimalw | @nimalw | Jan 22, 2022

Thanks JK. I wonder if we can ever get off prednisone? Looks like it's a life long drug sadly .

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JK | @contentandwell | Jan 21, 2022
In reply to @nimalw "Hi JK. How many months or years are you into your new kidney?" + (show)
@nimalw

Hi JK. How many months or years are you into your new kidney?

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@nimalw My transplant was liver, not kidney, and it was in September 2016 so I'm about 5.5 years post.
JK

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nimalw | @nimalw | Jan 20, 2022
In reply to @contentandwell "@nimalw That's the same as what I do. I have a battery of lab tests done..." + (show)
@contentandwell

@nimalw That's the same as what I do. I have a battery of lab tests done every other month, including my immunosuppressant. I had to get off of tacrolimus because it was making my creatinine go high so I am on sirolimus now and all is well.
JK

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Hi JK. How many months or years are you into your new kidney?

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JK | @contentandwell | Jan 20, 2022
In reply to @nimalw "Hi JK. He monitors his tac levels every 2 months . It's at 6 now and..." + (show)
@nimalw

Hi JK. He monitors his tac levels every 2 months . It's at 6 now and his creatnine is 1 .

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@nimalw That's the same as what I do. I have a battery of lab tests done every other month, including my immunosuppressant. I had to get off of tacrolimus because it was making my creatinine go high so I am on sirolimus now and all is well.
JK

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nimalw | @nimalw | Jan 18, 2022
In reply to @contentandwell "@nimalw The important thing is consistency, either take them with food or without food but be..." + (show)
@contentandwell

@nimalw The important thing is consistency, either take them with food or without food but be consistent.

You say he constantly monitors his tac levels. Can he do that at home or is it that he gets frequent lab work done for his transplant center as I do every other month? Most people, if they take their immunosuppressants at the same time every day actually are fairly consistent in whether they are taking them within a time range of eating or not.
JK

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Hi JK. He monitors his tac levels every 2 months . It's at 6 now and his creatnine is 1 .

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JK | @contentandwell | Jan 18, 2022
In reply to @nimalw "A freind of mine who is on his 6th after Transplant says he does not fast..." + (show)
@nimalw

A freind of mine who is on his 6th after Transplant says he does not fast at all only take them on time!!!! His tac levels are 6 and he constantly monitors them

Jump to this post

@nimalw The important thing is consistency, either take them with food or without food but be consistent.

You say he constantly monitors his tac levels. Can he do that at home or is it that he gets frequent lab work done for his transplant center as I do every other month? Most people, if they take their immunosuppressants at the same time every day actually are fairly consistent in whether they are taking them within a time range of eating or not.
JK

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nimalw | @nimalw | Jan 17, 2022
In reply to @athenalee "Yes…baby steps are always a good sign! Reducing prednisone may help your sleeplessness. I have hallucinations..." + (show)
@athenalee

Yes…baby steps are always a good sign! Reducing prednisone may help your sleeplessness. I have hallucinations on prednisone so fortunately was taken off it soon after my transplant.

I do have sleep issues sometimes due to an autoimmune disease. I take melatonin once or twice a week. Have you tried it? If not, maybe ask your transplant team about it. It comes in various doses, so easy to find a dose that fits one’s body.

Best wishes for healthy sleep!

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Hi Anthea . I think the pred reduction has helped! Sleeping has improved fingers crossed
I have heard of melatonin. Hopefully I dont need it now . Stay safe

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nimalw | @nimalw | Jan 17, 2022
In reply to @contentandwell "@nimalw I do the same for fasting, although since I take mine first thing in the..." + (show)
@contentandwell

@nimalw I do the same for fasting, although since I take mine first thing in the morning I'm not concerned about before. I'm surprised that it's only an hour before though because if you eat it takes more than an hour for the food to leave your stomach. I've seen as long as four hours before taking a medication but I think two hours is generally the guideline.

It really does make a difference as proved by when I made the change. A lot of people are unaware of that and they feel that they get the same results no matter how they take it but I think it may simply be that without even thinking about it, on the day of testing, or on the day before, they generally do the same thing as usual so that's why it's consistent. Of course some people may just absorb their medications differently I suppose too.
JK

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A freind of mine who is on his 6th after Transplant says he does not fast at all only take them on time!!!! His tac levels are 6 and he constantly monitors them

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