1. < Transplants

transplant Immunosuppressants

Posted by JK @contentandwell, May 19, 2017

I am on the usual post liver transplant prescriptions, Cellcept and Prograf. I have terrible "sweats" (some people call them night sweats but mine happen during the day too), and now I am having a problem with my lower digestive tract.

Have many of you experienced these sweats from those pharmaceuticals? There is a thought too that they may be from my thyroid and perhaps my dosage of leverthyroxine should be decreased. I literally get drenched from the top of my head to the soles of my feet. Not pleasant.

If you have experienced these lower digestive problems did they finally get resolved, and if so how?

I am having a little bit of hair loss too and was told to try taking biotin but the nurse did not say what dosage. Is anyone using that to help with hair loss, and if so what dosage was suggested?

Any help or suggestions are appreciated. I sometimes have a hard time getting through to the nurse who is my contact on the transplant team. I positively love my transplant center, MGH, but their one negative is responding to communications. Of course if it's serious they do but I think the nurse puts less serious concerns on the back burner and then forgets about them. She is very nice but not terribly helpful.

JK

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Charlie | @ca426 | Aug 17, 2017

Thanks for the reply Rosemary, I found out that I had this condition last year, a year after my fourth kidney transplant.....although the symptoms had been there for years and doctors said they didn't know what was causing it, per-say .
Thanks again

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 17, 2017
In reply to @ca426 "Thanks for the reply Rosemary, I found out that I had this condition last year, a..." + (show)
@ca426

Thanks for the reply Rosemary, I found out that I had this condition last year, a year after my fourth kidney transplant.....although the symptoms had been there for years and doctors said they didn't know what was causing it, per-say .
Thanks again

Jump to this post

@ca426, NSF is something that I had not heard of before. I am aware, though, of how cautious my doctors were about contrast agents when I needed some liver tests during my kidney failure. I wonder if this is why.
You say that you had the symptoms for years before the doctors learned the reason. How did they discover it? Is there anything that they are doing for it?
Rosemary

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Charlie | @ca426 | Aug 17, 2017

My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant is supposed to stop or slow down the condition, I've herd they're doing some other things at different centers but don't think they have found anything yet. I want to see if they'll run some tests to see exactly what all it has effected, besides the obvious things that you can see, I be willing to have try treatments on me, within reason of course that it might help other people.

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 17, 2017
In reply to @ca426 "My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant..." + (show)
@ca426

My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant is supposed to stop or slow down the condition, I've herd they're doing some other things at different centers but don't think they have found anything yet. I want to see if they'll run some tests to see exactly what all it has effected, besides the obvious things that you can see, I be willing to have try treatments on me, within reason of course that it might help other people.

Jump to this post

@ca426, I read that it is a rare condition. So it is good that it is discovered in you. I can understand why you want to know if it is affecting any other parts of your body.
Is your nephrologist associated with your transplant department?
Rosemary

REPLY
Charlie | @ca426 | Aug 18, 2017
In reply to @ca426 "My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant..." + (show)
@ca426

My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant is supposed to stop or slow down the condition, I've herd they're doing some other things at different centers but don't think they have found anything yet. I want to see if they'll run some tests to see exactly what all it has effected, besides the obvious things that you can see, I be willing to have try treatments on me, within reason of course that it might help other people.

Jump to this post

Yes, they set up everything from pre to post transplant,so it's all coordinated.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 18, 2017
In reply to @ca426 "My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant..." + (show)
@ca426

My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant is supposed to stop or slow down the condition, I've herd they're doing some other things at different centers but don't think they have found anything yet. I want to see if they'll run some tests to see exactly what all it has effected, besides the obvious things that you can see, I be willing to have try treatments on me, within reason of course that it might help other people.

Jump to this post

@ca426, That is a good thing.
I met a woman several years ago who shared her experience. She was at least 10+ years post transplanted with a kidney. Her transplant facility was a great distance for her to travel And she eventually asked to be released to a local nephrologist. And he wanted to make some medication changes - after her long term successful treatment at her transplant facility. Fortunately, she had the 'courage' to stand up to him and consult with her transplant team. They did not approve of his idea. She was doing well when I saw her in December 🙂

Rosemary

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