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

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!

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?

Thank you for your encouraging words. And, congratulations on your two year transplant anniversary! I hope you can continue to be well…with no more surgeries! I have been able to reduce Tac from 8 mg to 6 mg, but increased Mycophenolate to 2000 mg/day.

My transplant doctor doesn’t believe my increasing tremors and neuropathy are due to meds, however. So, I’m now seeing a neurologist and rheumatologist who believe my symptoms are due to Sjogren’s and possibly some other autoimmune response. Like you I’m dedicated to exercising, and I’m eating well and doing everything to keep my new liver healthy. I’ve also got pretty severe osteoporosis, so am now on meds for that.

I have my next appointment with my transplant team in July. I’m hoping I have more insights on my autoimmune issues by them so I can discuss potential impacts on my liver and treatments that don’t interfere with our anti rejection meds. I’m managing pain currently with Gabapentin. It seems like a lot of other meds recommended for neuropathy interact with Tacrolimus.

Currently, 6 mg/day. I was reduced to that level in early April. I’m hoping to get it reduced again at my next transplant visit in midJuly. I’m very strict on taking my meds at the same time and on an empty stomach for best metabolism. Fortunately, my stomach seems to handle this okay. My one year anniversary is August 20…very exciting!

Sorry but I meant the level of Tacrolimus in your blood. Your dr must want it to be between a certain level.

You will arrive at Your "New Normal" so keep working with your Transplant team and make sure you get there ASAP. I also take a boatload of Meds so keep a good discipline of Meds, exercise, even some "Quiet Time" to rest your mind. Keep at it and always look forward to something on your list.

Yes, now that Covid is declining, I do hope I can work on my bucket list again. I’ll share a funny “list” story, although definitely not funny when it happened.

Taking a helicopter ride was always on my list. I had an endoscopy to check for varices in September 2019, shortly after being diagnosed with PBC and cirrhosis. The proctologist found several and tied them off. Unfortunately, in October they burst and I ended up Air EVAC’d to Dartmouth for emergency surgery. Sent home after a week in ICU, and it happened again. The first ride in the helicopter I was intubated and drugged. But the second time I was awake and got to peep through the little window the crew cleared for me. I got to see a spectacular view of the Connecticut River in fall colors.

Needless to say I’ve crossed helicopter riding off my list!

I suggest you aim "higher" like on open air helicopter ride in Kawaii.