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

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

Thank.you am.taking the same . I have been told there is a likely 4th Dose for us Transplant recepiants

So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness? Or does it abate or perhaps even go away once one may be weaned off the drug that caused it at some point? My mother never took any of the drugs you mentioned as she never received a transplant. Her neuropathy was caused by diabetes and she eventually ended up in a wheelchair due to no feeling in her feet. Is that the future with neuropathy as a side effect of an immunosuppressant drug that a transplant patient has to take for a lifetime?

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.

So, no side effects from Sirolimus 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?

@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

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

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?

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?