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transplant Immunosuppressants
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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@ca426 Biotin is also recommended to help with hair loss.
JK
@ca426 I didn't realize that prograf can cause them. I am so glad that my shaky hands stopped with the transplant. Now the only time my hands shake is when I am really hungry. My shakiness was attributed to "essential tremor" prior to my cirrhosis diagnosis.
JK
@ca426, Hi, Charlie. I want to welcome you to the Connect. Thank you for sharing your tremor experience with being on prograf. I find that my tremors also vary in intensity. Sometimes they are barely noticeable; other times a bothersome annoyance.
Charlie, are you a transplant recipient? I am a liver/kidney (2009) recipient. What transplant did you receive?
I look forward to hearing more about your experience.
Rosemary
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1 Reaction@contentandwell, Other that when you are hungry, do you have any tremors now? What did they say was causing the essential tremors?
I never had tremors prior to transplant. I used to get shaky if I skipped a meal, though. Since transplant - and prograf/tacrolomus - I do get the tremors sometimes during the 2 hour time span after my morning dose at 8AM. I take my night dose at 8PM and I have not noticed them then.
I know it sounds crazy! But I also know that you transplant people understand:-)
Rosemary
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1 Reaction@chattykathy, It's been a while since we've heard from you. I hope you are doing okay.
Hugs,
Rosemary
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1 ReactionI 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.
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2 Reactions@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
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2 Reactions@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
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2 ReactionsI 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, 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