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?

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@athenalee

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.

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

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@janeent

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.

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Did your burning feet and other symptoms from tacro ever stop? I’m almost 4 years post transplant. Burning in my feet didn’t stop and has led to progressive peripheral neuropathy ( burning, numbness and pain). The neuropathy has now spread up my calves, to my thighs and hips. I have some numbness in my fingers, too. All my labs and kidney function are perfect but my life is miserable with this neuropathy! Im taking tacro 1.5 mg a day, cellcept 1000 mg a day, and prednisone 1 mg a day. Did they take you off tacro? What med did they put you on? I have been to neurologist and rheumatologist, neither have helped me. I am depressed.

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@nimalw

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

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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?

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@athenalee

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?

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

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@deb25

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?

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@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

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@saundrella

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

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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.

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@contentandwell

@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

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So, no side effects from Sirolimus JK?

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@athenalee

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?

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Hi . PN is not a issue for me at all . I have been active all my life into various sports throughout my life .
I just accept it and let time be the Healer my surgeon wanted me to golf after 6 weeks post surgery but I held it back till I did about 10 weeks and slowly got into it I only play half the course because but dont want to push it as I am worried about dehydration.

I struggled with Tremors and palpitations in the 1st month as I was on 20mg prednisone. Now am on 10mg . Very little tremors and no palpitations. Avoid coffee that does not help .

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@athenalee

So, no side effects from Sirolimus JK?

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@athenalee No side effects that I am aware of. I do have achy legs at times, in fact a lot, and I have heard that sirolimus can cause that but I'm not sure that is what it is from. They were not a problem until I started walking on pavement during the pandemic. Prior to that I was going to my health club and either using a treadmill or the impact-absorbing track, so I am doubting the pains are a result of sirolimus. I haven't been walking on pavement for a few months now though and they are still a bit achy.

Other than that, no side effects.
JK

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@athenalee

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.

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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?

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