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 | Jan 9, 2022
In reply to @saundrella "Is neuropathy a typical response to the post liver transplant medications?" + (show)
@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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1 reply
JK | @contentandwell | Jan 9, 2022
In reply to @deb25 "Does Sirolimus cause you any bad side effects that you did not have with tacro? I..." + (show)
@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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1 reply
Saundrella | @saundrella | Jan 9, 2022
In reply to @athenalee "Yes. I was walking 3-5 miles/day, but unfortunately I’m back a work FT and winter is..." + (show)
@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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1 reply
athenalee | @athenalee | Jan 8, 2022
In reply to @nimalw "Hi Do you excercise? I excercise or golf 6 days a week . This seems to..." + (show)
@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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2 replies
deb25 | @deb25 | Jan 8, 2022
In reply to @janeent "I am on week 3 post transplant. The Tacrolomus has been hard to deal with. My..." + (show)
@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 | @nimalw | Jan 8, 2022
In reply to @athenalee "I would recommend that you speak with your transplant doctor about your concerns. My peripheral neuropathy..." + (show)
@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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1 reply
athenalee | @athenalee | Jan 8, 2022
In reply to @deb25 "Does Sirolimus cause you any bad side effects that you did not have with tacro? I..." + (show)
@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?

Jump to this post

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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1 reply
leahd | @leahdrose | Jan 8, 2022
In reply to @rosemarya "@leahdrose, I want to follow-up our recent conversation to invite you to this discussion where some..." + (show)
@rosemarya

@leahdrose, I want to follow-up our recent conversation to invite you to this discussion where some members have shared their experiences with taking biotin for thinning hair after their organ transplant - with approval of their transplant depts.

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@rosemarya. It was nice meeting you at the Culinary Arts zoom meeting last week. Thank you for directing me to this discussion.

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nimalw | @nimalw | Jan 8, 2022
In reply to @deb25 "Does Sirolimus cause you any bad side effects that you did not have with tacro? I..." + (show)
@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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Hi . I got the same numb feeling on leg foot and thigh . But its slowly getting less am 3 months post kidney transplant. We need to be patient I think . I have been told it can take up to 6.months plus to get back to normal. Hope this helps 🙏

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 7, 2022
In reply to @deb25 "Does Sirolimus cause you any bad side effects that you did not have with tacro? I..." + (show)
@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 noticed in in your comment the mention of tacrolimus and some of the other common medications that are prescribed for transplant recipients. I take tacrolimus, cellcept, and I used to take prednisonefor my liver and kidney transplant in 2009. I have had no serious side effects with those meds. Since I have no experience with Sirolimus, I would like to share this information - Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

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