1. < Transplants

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?

Interested in more discussions like this? Go to the Transplants Support Group.

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
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!

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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 .

REPLY
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....

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!

Jump to this post

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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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!

Jump to this post

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

REPLY
1 reply
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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cania | @cania | Feb 15, 2021
In reply to @jolinda "Hair loss! One of my first side-effects showed up just days after being released from the..." + (show)
@jolinda

Hair loss! One of my first side-effects showed up just days after being released from the hospital when I noticed gobs of hair falling out in the shower. I was so grateful for the new kidney and it seemed petty to care about my hair but I worried if it would never stop. One of my doctors at Mayo Clinic theorized that my hair loss was caused from a combination of trauma to my body from surgery, being severely anemic and as a side-effect from one of my anti-rejection drugs. She prescribed Vitron C (an high-potency iron supplement with vitamin c) to treat the anemia but there was nothing else she could do. My hair continued to fall out to a lessening degree for the next two years until it finally rebounded. I will never have the same hair but it got better. I was recently told hair loss should be treated by a dermatologist which I think is interesting.

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Post transplant 18 years. In a few months will be 19 years.
No complications from the start of my transplant up to now.
I take 3mgs of prograf in the morning w/250mgs of Cellcept at night
&
2mgs of Prograf at night w/ 250mgs of Cellcept.
My immunosuppressived are brand name. Cannot take generic

REPLY
1 reply
athenalee | @athenalee | Feb 15, 2021
In reply to @colleenyoung "@jerrydrennan @lisamb @livertrex, what questions should @athenalee prepare for her consultation with the neurologist?" + (show)
@colleenyoung

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

Jump to this post

Thank you everyone for the sharing of your experiences and insights. I’m feeling more comfortable about the knowledge I can bring to my neurologist appointment. It is very much a daily struggle, but I know that my alternative would have been death. So, the blessings of my new liver are always in the forefront of my thoughts. And, the support and guidance I have found through this group also helps me remain strong, especially during these isolating and difficult times!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 7, 2021
In reply to @cania "Post transplant 18 years. In a few months will be 19 years. No complications from the..." + (show)
@cania

Post transplant 18 years. In a few months will be 19 years.
No complications from the start of my transplant up to now.
I take 3mgs of prograf in the morning w/250mgs of Cellcept at night
&
2mgs of Prograf at night w/ 250mgs of Cellcept.
My immunosuppressived are brand name. Cannot take generic

Jump to this post

@cania, If my math is correct, You must be near the date to celebrate your 19th transplant anniversary. Please accept my sincere congratulations.

Did you do anything special to honor this day?

REPLY
benlam11 | @benlam11 | Jun 8, 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

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.

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