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

I would recommend that you speak with your transplant doctor about your concerns. My peripheral neuropathy symptoms continued to get worse, after first developing tremors and numbness about two months after my transplant.

I was sent to a neurologist and a neuromuscular doctor. Liver disease and two autoimmune diseases contribute to my PN, however, the doctor believes that Tacrolimus, in my case, is a primary contributor. However, everyone’s experience with our medications are different.

I’m seeing my liver doctor in February to discuss switching to another immunosuppressant. I can’t take prednisone, so she has been reluctant to switch me off Tac. I’m going to also see a rheumatologist and neuromuscular doctor at my transplant hospital to try to better coordinate my treatment.

I am on week 3 post transplant. The Tacrolomus has been hard to deal with. My extremities felt like they were on fire, my feet hands and ears, I was itchy everywhere, I was shaky, my lips were numb and I was so sick to my stomach with diarrhea. They lowered my dose to 2 mega in am and 1 in pm. I still have the on the fire sensation in my feet, but the rest have subsided. I do have to eat something at least 30 minutes before taking my meds otherwise I am sick to my stomach. They just lowered my cellcept to 3 and 3 in am and pm respectively. My hair didn’t fall out and I was taken off prednisone on day 4 post transplant. Still waiting for the swelling to go down. I can see right where they placed the kidney. I hope it does t stay like that long term.

Hi Do you excercise? I excercise or golf 6 days a week . This seems to help

Yes. I was walking 3-5 miles/day, but unfortunately I’m back a work FT and winter is here. But I’m still averaging 1.5-2 each day, plus Qigong exercises and dancing.

What I’ve read for PN and Sjogren’s is exercise is essential. If nothing else, I feel walking helps me adjust to the increasing numbness in my legs and feet.

I primarily do my work at a computer, so sitting is hard. Plus, tremors are my worse challenge and struggling with typing. I use an iPad and Apple keyboard, plus Siri at home. I have to use a small portable keyboard at the office.

How do you find golfing? I would imagine all the walking is beneficial. Does PN make it more challenging?

Does Sirolimus cause you any bad side effects that you did not have with tacro? I think tacro has caused peripheral neuropathy in my feet and legs. I want to switch to Sirolimus. Do you have to take cellcept and prednisone?

Is neuropathy a typical response to the post liver transplant medications?

@deb25 I think it's fairly individual if you need to take other pharmaceuticals along with the basic immunosuppressant like sirolimus. I did take a small dose of prednisone for quite a while (I'm more than 5 years post-transplant) but this past year they finally tried taking me off of it and things went fine so now I just take sirolimus. I haven't taken Cellcept since sometime during my first year post-transplant, before I was switched to sirolimus.

I have had no problems since my transplant other than the creatinine caused by tacrolimus so what they are doing seems to be working perfectly.
JK

Yes. I was walking 3-5 miles/day, but unfortunately I’m back a work FT and winter is here. But I’m still averaging 1.5-2 each day, plus Qigong exercises and dancing.

What I’ve read for PN and Sjogren’s is exercise is essential. If nothing else, I feel walking helps me adjust to the increasing numbness in my legs and feet.

I primarily do my work at a computer, so sitting is hard. Plus, tremors are my worse challenge and struggling with typing. I use an iPad and Apple keyboard, plus Siri at home. I have to use a small portable keyboard at the office.

How do you find golfing? I would imagine all the walking is beneficial. Does PN make it more challenging?

So, no side effects from Sirolimus JK?

It’s listed as “less common” in Tacrolimus and Cyclosporine, and “more common” for Sirolimus. Although, 56% of people on Tacrolimus get tremors. They all have their side effects. But, it certainly varies among transplant recipients. For me, the meds are just compounding my comorbidities.