transplant Immunosuppressants

@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 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 "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

@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.

@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

@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 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.

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