General
tremors? tacrolimus?
November 8, 2021
in General
Hey friends,
I've been taking Prograf (also called Tacrolimus) since my liver transplant 16 years ago. When my dose is too high, I get really bad tremors. It's most noticeable in my hands and legs, but yesterday my sister told me when she hugged me that she could feel it throughout my body.
What is your experience with tremors (or as my kids call them, the shakies)?
What's challenging for you when your tremors are bad?
I made a silly video about things that are hard for me when tremors are bad. Check it out on Instagram
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Transplant Patient
I was switched from Prograf to Advograf a while ago (a longer release form of tacro) and that's helped my tremors. I do have them still, mainly in my hands and legs. Now that they switched me to longer release tacro they aren't usually bad enough to prohibit me from doing anything. But I know now not to try to stand up if my legs are shaking really bad. Or try and do eyeliner.
My dog responds to my tremors now and she'll start by putting her paw on my leg when it's shaking, then her head, then her whole body. She just flops on me to stop the shaking, which I find so adorable. Or if I get up after a tremor she'll follow me to make sure I don't fall over, or on walks wrap herself around my legs to keep me up.
Transplant Patient
I love dogs for this very reason! I've not ever been given Advograf. I need to inquire more about it.
Did the tremors start after a certain point on tacrolimus? I have never experienced tremors since my liver transplant in January 2021.
Yes, I had tremors. Switched to Envarsus ( time released prograft). Tremors have improved significantly.
Transplant Patient
@Mot thanks for sharing.
Transplant Patient
@VeggiePowered, in my experience, it's only happened when my dose was too high. I would say the majority of the time I don't have tremors. They just came back when I needed a higher dose of Tacro, and I had forgotten what a pain they are!
When my dose was higher I would have tremors but it's been awhile since I've had them. Much lower dose now
I was initially put on prograf after my liver transplant over 9 years ago. They had to take me off it because I had way more than tremors. I was on Sirolimus for almost 9 years and I developed tremors from that med. they put me on Tac beginning of this year because I was having a surgery, and now my tremors have increased recently. So I might have to talk to my doc about the other meds mentioned above. Tremors are in hands and legs. Only real pain is eating and drinking, but doable. Just a pain and embarrassing. Two of my grandkids sometimes call me shaky. 😂😂
I experienced the tremors really bad the first few months but as they reduced my tac my tremors have become less frequent. I still have them but I don’t notice them but my family will tell me I’m shaking at times. I can deal with them as long as I feel as good as I do right now. Best of luck getting help with yours. I’m not quite 2 years post transplant.
I had a kidney transplant in June. I take prograf and I have had tremors in my hands the entire time. I developed EBV with very high numbers, so they reduced my prograf to only 2 in morning and 1 at night. This was to help my own immune system fight the virus. It didn't work. I now have lymphoma cancer.
Needless to say, I still have the tremors in my hands. At times I can hardly type on my phone. And, writing something is difficult for legibility.