Transplant anti-rejection medications. What's your advice?

Hello Athenalee, I was transplanted a liver in June of 2018 and since I have been on 4 mg tac and 2000mg cellcept. I have studied over and over of all the possible effects of these medications and yes it can seem to be a great sacrifice. I have had most of the same things that you are experiencing and it continues, I am active by exercising daily, doing my best to eat right but there are days when all the above hinder me. At first I felt panic and talked to Mayo many times and brought it up during visits but all my labs, tests and scans were good and was advised that yes there are side effects to all medications. For me I have to raise myself above with the drive to get busy and occupy the mind although it is rugged. The only advice I can offer is hopes and prayers that you can find relief. Celebrate your new liver. I am 66 with arthritis, hbp, and living with gamm barre and of course now the great of Covid.. THe best to you....

@athenalee I was transplanted sept 2018. i developed sever tremors. i also had what they called drop foot. once i was dropped down on medication the tremors subsided, except i have tremors in my vocals. i saw several neurologist, speech therapist. They even changed my meds. didn't help with the speech. The drop foot went away after a year. I was on tac for 2 yrs. now i am on sirolimus .

Hello everyone. I had a liver transplant nearly six months ago. My new liver seems to be doing well. But I increasingly suffer from nearly debilitating tremors, muscle pain, numbness in my right leg, occasional nerve pain in my foot and leg, joint pain in knees and hands. Most likely due to Tacrolimus. My liver doctor wants me to see a neurologist for neuropathy. So, I’ve been doing lots of research on it. I do not drink, do not eat refined sugar, no diabetes (yet anyway), and walk and exercise regularly. On Wednesday, my Dr. reduced my Tacrolimus to 7 mg/day and raised my Cellcept from 1,000 mg/day to 2,000. I’m curious to hear about the experiences of other transplant patients with these symptoms and if they go away or continue? I’m also wondering of what to expect at the neurologist visit and perhaps questions to ask a neurologist. This is so new to me and increasingly worrisome! Any insights would be greatly appreciated!

@athenalee I don't have time to read these now but they sound very interesting. I definitely plan to return later to read them.
JK

Here are two articles I found very insightful.

Thank you for your insights. I did research on CIPS and added to my files to discuss with my doctor. Gabapentin doesn’t seem to work on the leg numbness, but I was having sharp nerve pain in my leg which has stopped. I have been doing stretches and qigong most days and walk when weather permits. They tried to reduce my Tacrolimus dose, but my enzymes shot up so I had to go back to the level I started on. I’m hopeful I’ll be able to reduce before my hair all falls out! I wish you greater success at managing CIPS.

Wow! I didn’t know that was possible!

That’s a good idea. Thank you! My one year check up is next month. I’ll add it to my list of questions. 🙂

The fifth doctor I saw tried prednisone (unsuccessfully) and ordered a knee MRI. They found I have bone marrow edema, consistent with calcineurin inhibitor pain syndrome (CIPS). I’m already on a low dose of Tacrolimus, so right now they’re managing the pain with Gabapentin. I’m up to 300 mg at night, but 100 mg is enough during the day. My symptoms are similar to yours. It started in my knees and hips, and within a few months all my joints were affected. If I sit too long I can barely stand up. I’ve found stretching and low impact exercises help immensely. If I don’t stay on top of it my muscles tighten and the pain is worse. At least with the meds I’m sleeping! Thank you for the well wishes. I hope you are better soon. Does the gabapentin help the numbness? I know it’s used to treat neuropathy.

I have pretty severe muscle and joint pain, particularly in my back, neck, and hands. My legs get very stiff when I get up from sitting and lying down. It’s worse after walking, standing for more than an hour or so, and sitting at my computer. I have read all about Tacrolimus and had assumed it was that. Since I’m five months out and it is continuing to get worse my doctor wants to eliminate other possible causes. So, since I’m quite underweight I’m getting a bone density scan to check if I have osteoporosis. Next may be a neurologist, as I also have worsening tremors and numbness in my leg.

Re: pain and sleep, have you tried melatonin? Chamomile tea, kava, and similar herbal sleep remedies can interfere with Tacrolimus, so best to avoid. I take 1 or 2, 100 mg caps (the lowest dose) of gabapentin at night. It doesn’t help with pain other than nerve related (so it helps with liver pain), but it is relaxing and really helps me to sleep. It isn’t metabolized by the liver, so doesn’t interfere with Tacrolimus. I hope you can at least find sleep soon...it’s so important for healing and wellbeing.