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JK, Volunteer Mentor
@contentandwell

Posts: 1950
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

@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

Hello everyone; I haven’t checked in a while. I find this question interesting because I have had “night sweats” before and after transplant. I have had tremors, more prominent after transplant than before. I don’t know what you mean by lower GI symptoms, if diarrhea, no symptoms. I tend to be more worried about the tremors than anything else. My mother had Parkinson’s disease induced by a medication and that is worrisome for me. I can live with most of my symptoms without much worry as I feel it is a small price to pay. I do not have thyroid problems. I hope you can find the answer soon. Until next time. CK.

@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 Thankfully I do not have tremors after my medication, but interestingly my hands shook a lot before my transplant. Any pictures I took then are blurry. I had that for about 10 years (my hepatologist, without that knowledge, said I probably had cirrhosis for 10 years because the revealing symptoms do not present themselves for awhile). My shaky hands were diagnosed as “essential tremor”. Since that symptom is now gone it was obviously from the cirrhosis. They watch for hands “flapping” which is a stronger variation of trembling but mine never got that far.
JK

@chattykathy

Hello everyone; I haven’t checked in a while. I find this question interesting because I have had “night sweats” before and after transplant. I have had tremors, more prominent after transplant than before. I don’t know what you mean by lower GI symptoms, if diarrhea, no symptoms. I tend to be more worried about the tremors than anything else. My mother had Parkinson’s disease induced by a medication and that is worrisome for me. I can live with most of my symptoms without much worry as I feel it is a small price to pay. I do not have thyroid problems. I hope you can find the answer soon. Until next time. CK.

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@chattykathy “Lower digestive problems” was my attempt to describe diarrhea in a more discreet manner. Yes, I definitely meant diarrhea, for a couple of days I didn’t dare to leave the house. Since they adjusted my medications it is not quite as bad but it is still a problem to a lesser degree. I am not supposed to eat salads, which were the mainstay of my diet, nor things with a lot of roughage.

The trembling hands could well be as I mentioned in my prior post, “essential tremor”. It is not a big deal, just a nuisance.

For the sweats, they have told me to have my thyroid checked and when they saw the results, which were low which means my thyroid is not very deficient, they suggested that may be causing the night sweats. I coincidentally saw my PCP this past week and told him so he cut my thyroid medicine in half. We will see if that helps.
JK

@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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@contentandwell Regarding post transplant trembling, I am not sure if the immunosuppressants are responsible or not. My trembling occurs at any time of the day and at different levels of intensity. There is no direct correlation with when I have taken my meds. I believe my trembling is probably from autonomic neuropathy. I can sometimes still my hands with intention well enough to thread a needle, so I am happy for that. I guess it concerns other people more than it does me, so that gives me a chuckle.

@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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@2011panc, I am so thankful to not have trembling hands anymore. Some days it was difficult to raise a cup of coffee tea to my mouth.
I rarely tremble anymore.
JK

@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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@2011panc, @contentandwell
I have the trembles. They usually occur 1-2 hours after my morning meds. Some days they are more noticeable than other days. That is when I have to forego any hand writing, or tiny sewing projects.
Here’s a chuckle for you! I picked up my violin after transplant, and started playing again. I play for the 8:00 Sunday church service. We joke that I have a real strong vibrato going during that time!
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

Jump to this post

@rosemarya I am so glad my hands are more controllable now. After the transplant I received many flowers and gifts but had to do thank you notes on the computer (I made a template for my note cards) because my handwriting was so illegible. This had been happening gradually for a number of years. I worked part-time at a local Ethan Allen in customer service and the manager used to ask where I learned to write it was so illegible.

Violin! Such a cool instrument to play. My daughter played piano but after college she bought herself a violin and used to play. I suspect the violin is gathering dust now, she has a really busy life. I wish I could still play the piano well enough to play at church of something. My mother played so well she could have been a concert pianist.
One of the women in water classes plays and instructs Harp! Another cool instrument. She does a little performing too.
JK

I have never had any of the symptoms you’re describing, I would suggest talking with your transplant nephrologist, as far as your hair that’s a little strange, the b-vitamins do help, Lef.org has some great products and although I understand your frustration with the nurse , I have the same problem, we have to remember that they have a lot of patients.

@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

Jump to this post

Prograff does cause tremors, I have them sometimes they are worse than others but I’ve sorta gotten used to them.

@ca426 Biotin is also recommended to help with hair loss.
JK

@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

Jump to this post

@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

@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

Jump to this post

@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

@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

Jump to this post

@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

@chattykathy

Hello everyone; I haven’t checked in a while. I find this question interesting because I have had “night sweats” before and after transplant. I have had tremors, more prominent after transplant than before. I don’t know what you mean by lower GI symptoms, if diarrhea, no symptoms. I tend to be more worried about the tremors than anything else. My mother had Parkinson’s disease induced by a medication and that is worrisome for me. I can live with most of my symptoms without much worry as I feel it is a small price to pay. I do not have thyroid problems. I hope you can find the answer soon. Until next time. CK.

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@chattykathy, It’s been a while since we’ve heard from you. I hope you are doing okay.

Hugs,
Rosemary

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