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

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

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jerrydrennan | @jerrydrennan | Feb 14, 2021

@athenalee , In my case the neurologist asked a lot of questions about my history before transplant. I asked about reaction to tacrolimus so they switched me to cyclosporine. this did not help with the tremors in my speech. side affects were a lot worse on cyclosporine. they moved me back to tacrolimus. ask about changing medication, The Neuropathy comes and goes. The Neurologist did not find anything wrong. It did take about a year for the body tremors and drop foot to stop. i am still struggling with the speech. Stay strong and God Bless

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 14, 2021
In reply to @athenalee "Hello everyone. I had a liver transplant nearly six months ago. My new liver seems to..." + (show)
@athenalee

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!

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@jerrydrennan @lisamb @livertrex, what questions should @athenalee prepare for her consultation with the neurologist?

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1 reply
livertrex | @livertrex | Feb 14, 2021
In reply to @athenalee "Hello everyone. I had a liver transplant nearly six months ago. My new liver seems to..." + (show)
@athenalee

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!

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Yes, my liver transplant was a year ago. I was also dizzy, but i had all the symptoms you describe. They all seem to finish over the months. Walking helped me the most. I do take magnesium. However the neuropathy still lingers. I went to the neurologist did all the tests. In the end it just takes time.

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lisamb | @lisamb | Feb 14, 2021
In reply to @athenalee "Hello everyone. I had a liver transplant nearly six months ago. My new liver seems to..." + (show)
@athenalee

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!

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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....

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jerrydrennan | @jerrydrennan | Feb 14, 2021
In reply to @athenalee "Hello everyone. I had a liver transplant nearly six months ago. My new liver seems to..." + (show)
@athenalee

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!

Jump to this post

@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 .

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athenalee | @athenalee | Feb 14, 2021

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!

REPLY
6 replies
JK | @contentandwell | Feb 2, 2021
In reply to @athenalee "Here are two articles I found very insightful." + (show)
@athenalee

Here are two articles I found very insightful.

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@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

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athenalee | @athenalee | Jan 31, 2021
In reply to @gphetteplace "The fifth doctor I saw tried prednisone (unsuccessfully) and ordered a knee MRI. They found I..." + (show)
@gphetteplace

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.

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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.

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jennifer0726 | @jennifer0726 | Jan 30, 2021
In reply to @livertrex "Am at 7 months post transplant and I am on .5 every 12 hours." + (show)
@livertrex

Am at 7 months post transplant and I am on .5 every 12 hours.

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Wow! I didn’t know that was possible!

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