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JK, Volunteer Mentor
@contentandwell

Posts: 2272
Joined: Feb 18, 2017

transplant Immunosuppressants

Posted by @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

REPLY

@rosemarya

@contentandwell, Thank you for posting this. I think that it is an excellent question / concern of many for us recipients!
JK, When I talk to others who are on immunosuppressant meds, one of the first things they mention is the trembling sensation after the morning dose.

I want to bring some members into this discussion. @eileenheart, @2011panc, @chattykathy. Each of you has had varying post transplant experience, do you have any immunosuppressant ‘challenges’ that you are living with?

I also want to invite and introduce @doogie02, who is a brand new recipient, to listen i in to the conversation. @doogie02, feel free to join in wherever you are comfortable sharing. We are excited to welcome you!
Rosemary

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I have had four kidney transplants, most recently 2/1/2015 , the tremors do very, not sure why..I’m sure that my transplant experience is much different than most, my first transplant shouldn’t be counted, it only lasted two months and I was in the hospital for eight months and almost died…the other ones FSGS and chronic rejection but this one was the closest thing to a perfect match and doing great.

@rosemarya

@contentandwell, Thank you for posting this. I think that it is an excellent question / concern of many for us recipients!
JK, When I talk to others who are on immunosuppressant meds, one of the first things they mention is the trembling sensation after the morning dose.

I want to bring some members into this discussion. @eileenheart, @2011panc, @chattykathy. Each of you has had varying post transplant experience, do you have any immunosuppressant ‘challenges’ that you are living with?

I also want to invite and introduce @doogie02, who is a brand new recipient, to listen i in to the conversation. @doogie02, feel free to join in wherever you are comfortable sharing. We are excited to welcome you!
Rosemary

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@ca426, Charlie, thank you for your response. I am really honored to meet you, a fellow recipient. I am happy, that you are doing well. I look forward to learning more of your experience as we continue our conversations

Your transplant journey is a powerful testimony to the strength of your determination and the expertise of your transplant team. Your journey is an amazing one. And, yes, it is different from others that I have read on this forum – and – it is HOPE to many patients who are going thru difficulties on their journey now.
Right now we have several members who are in varying stages of kidney disease and transplant preparation who will want to meet you and learn from you.

I want to welcome you to read thru some of the discussions in the Transplant Group. Please join in. I want to point out that The Living Life After Transplant forum is going to be the basis for a blog written by the Mayo Clinic Transplant Staff. I believe that they are going to start taking our ideas in August.
Why don’t you add something that you do to stay healthy and active since your transplant? – There are still a few days left!

Here is the link.
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

Rosemary

@rosemarya

@contentandwell, Thank you for posting this. I think that it is an excellent question / concern of many for us recipients!
JK, When I talk to others who are on immunosuppressant meds, one of the first things they mention is the trembling sensation after the morning dose.

I want to bring some members into this discussion. @eileenheart, @2011panc, @chattykathy. Each of you has had varying post transplant experience, do you have any immunosuppressant ‘challenges’ that you are living with?

I also want to invite and introduce @doogie02, who is a brand new recipient, to listen i in to the conversation. @doogie02, feel free to join in wherever you are comfortable sharing. We are excited to welcome you!
Rosemary

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@rosemarya Hi Rosemary, sorry for the delayed response, we went to Maine over the weekend.
I guess mine should really be called shakiness, not tremors, and I never had the “flapping” that can occur with cirrhosis. What I have now, and pretty much only when I am really hungry but not always then either, is pretty minor.

Essential tremor is just something that many people have as they get older. It was basically diagnosed because there was no other apparent reason for the shakiness. Of course now I know it was the cirrhosis. It’s amazing how many things that effects. My hand would shake and it was difficult to get a manicure but my nail tech was great. She and I have become quite close. She would hold my hand with one hand while doing my nails with the other. It was really embarrassing at times because it was often difficult to drink a cup of coffee or to have a bowl of soup, raising the spoon to my mouth, and my handwriting was totally illegible. It took awhile for the handwriting to get better again, but then my handwriting has never been great, lousy fine motor control.
I guess these immunosuppressants cause different things with each person and tremors are not one of the effects I have. My biggest are the sweats that I have mentioned before and now the lower digestive problems. I am taking two imodium a day and that has helped a lot.

A good web site re. Essential Tremor — from who else but Mayo Clinic of course!
http://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/dxc-20177829

It is like some kind of club that us transplant belong to, one that we never wanted to join but now that we are part of it, it is rewarding to touch bases with others. I copied a posting that was on the Compare Transplant Centers Facebook page about how many people are waiting, how many got transplanted in the first quarter, and how many do not generally make it. I put it on my Facebook hoping that some people would be swayed by it to get on the organ donor registry. I was really pleased with how many already had signed up. When you see statistics like that showing how many people do not make it, it really strikes home. I tried to remind them of how they would feel if someone near and dear to them needed an organ and couldn’t get one. I figure if all of us who have had transplants can get even 5 people to sign up it can make a difference, not that I want to see any of them pass away of course. I am sure many people have good intentions and just procrastinate, or some probably just think it does not relate to them. I don’t want to be obnoxious about it, or be nagging, but it has become something very near and dear to my heart. When I saw the stats for MA I realized even more how fortunate I am to be here.
JK

I was wondering if there’s anyone that has NSF from gadolinium toxicity or that has it? I probably should clarify NSF-Nephrogenic systemic fibrosis.

@ca426

I was wondering if there’s anyone that has NSF from gadolinium toxicity or that has it? I probably should clarify NSF-Nephrogenic systemic fibrosis.

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@ca426, Hi, Charlie. I do not have any experience with nephrogenic systemic fibrosis (NSF). I had to look it up on Mayo’s diseases and symptoms page at the link below.
http://www.mayoclinic.org/diseases-conditions/nephrogenic-systemic-fibrosis/home/ovc-20204357

I hope that someone will see this and reply to you.
Rosemary

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

@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

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@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

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.

@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.

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@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

@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.

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

@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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