← Return to My wife still has terrible shakes 5 months post Liver Transplant.

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@kim1965 your comment/question brought me back to shakier times in my early post liver transplant experience. Did your wife experience shaking pre transplant, and/or episodes of hepatic encephalopathy? I did in spades, and post transplant I was alarmed that the shakiness was worse and lasted for several months. When I said, ‘enough’ to my team 3-4 months out, they shared that they could change me to a different formulation of tacrolimus (my primary immunosuppressant) that was extended release. They would need to appeal to insurance to cover it, as it’s much pricier and I said ok. However during this process the shakes subsided on their own. Somewhere in there my prednisone was dialed down and discontinued which may have related to my improvement. Who knows why. It’s so hard to experience that and I know that on some level it troubled my family more- they thought I was in pain. I hated having trouble writing, texting, cooking, maintaining balance, falling asleep but it did improve. Perhaps there is a better medicine formulation for your wife, or maybe her body is still adjusting/recovering. We are on powerful medications, especially in the first 6 months-1 year. Please share how this unfolds- I think this is an important topic especially within the first year of transplant. I never thought I’d stop shaking, I accepted it as my lot in life and now it’s a distant memory 3.5 years out. Likely it will be for you and your wife. Keep us posted!

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Replies to "@kim1965 your comment/question brought me back to shakier times in my early post liver transplant experience...."

@katebw thank you so much for responding, it's a big relief to hear your experience and eventual stop of the shakes. My wife's case is very similar to yours. About a month ago, after a very difficult first month and half with 4 surguries, her liver started a mild rejection/infection, and she was admitted again, but felt ok. After 4 days in her numbers starting improving again, as they put her back on prednisone 40mg, and the shakes never really left, but got worse being back on the prednisone. As the numbers came back in line, we slowly lowered the dose weekly per our team's instructions, and this should be her last week on them. Additionally, about 10 days ago, the exact extended release capsules of tacrolimus was finally traded out for the traditional version, and I read good things about it, but it takes time, and she about out of gas in patience, in terms of being limited to sitting in a chair all day, but some research we read, and your great information, hopefully will give her some relief in the coming months. We just went past 5 months post transplant, I'm hoping 6-9 months, we see some drastic improvement in the reduction of the shakes. I'm curious if you also had difficulty walking much more than a few minutes without having to sit down also? Anything, you can share is most appreciated.