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Transplant anti-rejection medications. What's your advice?
Transplants | Last Active: 16 hours ago | Replies (324)Comment receiving replies
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!
Replies to "Hello everyone. I had a liver transplant nearly six months ago. My new liver seems to..."
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....
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.
@jerrydrennan @lisamb @livertrex, what questions should @athenalee prepare for her consultation with the neurologist?
I'm a Liver and Kidney transplant patient (June 2019) I also had Carotid artery surgery (Aug 2019) and a double by-pass (Oct 2020). I'm a diabetic and I Have Neuropathy Before Transplant and ot's still the same. I use Gabapentin. I also had the tremors, even fell - after I Tapered off Prednisone and my Tac and Cellcept were reduced (after 6 months) - I improved significantly. I started Pool Walking as soon as possible. Now I'm on 1000mg Cellcept and 5 mg Tac daily. Keep going - things will improve and find some good neuropathy management. Also keep asking questions of your transplant team, they are Great and will be a source for you.
What is your Tacrolimus level from your blood tests? Is it within range?
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@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 .