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 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?

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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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 7, 2022

@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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1 reply
deb25 | @deb25 | Jan 7, 2022
In reply to @estrada53 "As far as dosing goes. - 1 mg of sirolimus, 500 mg of cellcept 2x day..." + (show)
@estrada53

As far as dosing goes. - 1 mg of sirolimus, 500 mg of cellcept 2x day and 5 mg of prednisone. 🙂

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Do you only take 1 mg of Sirolimus a day in the am?

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deb25 | @deb25 | Jan 7, 2022
In reply to @contentandwell "@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially,..." + (show)
@contentandwell

@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially, they recommended that I drink 80 - 100 ounces of fluid a day and that helped, but not enough. They then changed me to sirolimus and since then I have been fine.
The only noticeable effect I had was thinning hair but the transplant team suggested that I take biotin so I do. I have continued to take it because it is also good for your fingernails and mine are very thin.
I was able to drop from 4mg a day of sirolimus to 2.5 when I chose to take it consistently without food. I set my alarm for 6:30, get up and take my medications, and try to go back to sleep for another hour but usually that does not happen so I just get up and do something until the hour has elapsed. Since I tend to be inconsistent when I eat my breakfast, and I am supposed to take the sirolimus at the same time daily, I find this works for me.
JK

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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?

REPLY
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