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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 27, 2021
In reply to @jackiez "Hi-congrats on your transplant! I am 8 months post heart/lung transplant. The shakiness with Tacro will..." + (show)
@jackiez

Hi-congrats on your transplant! I am 8 months post heart/lung transplant. The shakiness with Tacro will go down as your strength builds back too. I worked hard on my arm and hand strength and I’m back to normal. I shed hair like a golden retriever (you have to laugh or you cry 😊). So it’s thin and not showing signs of improving. I will likely go from Tacro to another med in Feb, if all goes according to plan. That should help the hair loss. I had some nausea and sleeplessness but that was associated with a BP med that I’m no longer on and the symptoms went away. On prednisone and have much thinner skin now and bruise/bleed a lot easier. Just have to adapt as best I can. In the beginning lots of med tweaks and now pretty stable. Overall doing great!

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Hi Jackie, I'd like to add my welcome. So glad you could join the Transplants group and add your experience, tips and questions. Allow me to introduce you to a few discussions that you may wish to contribute to:
- Heart-Lung Transplant Journey https://connect.mayoclinic.org/discussion/heart-lung-transplant-journey/
- Anyone had a lung transplant? I have questions https://connect.mayoclinic.org/discussion/lung-transplant-1/
- Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

REPLY
jackiez | @jackiez | Dec 27, 2021
In reply to @athenalee "@jackiez, I had a liver transplant in August 2020. My hair was falling out big time...." + (show)
@athenalee

@jackiez, I had a liver transplant in August 2020. My hair was falling out big time. Someone on Connect recommended Biotin. I cleared it with my transplant team and it has stopped the hair hemorrhage! My hair is still thin, but growing back well. I started with 10,000 mcg and reduced to I 5,000 mcg daily. I also dab a small amount of Argon Oil along the roots of my hair before I shower and massage it in. I read that it helps make hair healthy. Perhaps check with your transplant team. Biotin does interfere with some labs however. I have osteoporosis (which BTW is certainly made worse by Tac) and before I do labs for my endocrinologist, I stop the biotin for five days prior.

It’s definitely a life of adjustment to our new organ and meds. I’ve found a healthy diet and exercise help. Glad your otherwise doing well!

Athena

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Thanks Athena and congrats on your continued success with your new liver! I’ll try the argon oil. My Transplant coordinator and team suggested only external applications because a biotin supplement can mess with my Tacro level. So I’ll deal with the shedding for now and try the argon oil. The med change in Feb should help too!

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 27, 2021
In reply to @jackiez "Thanks Athena and congrats on your continued success with your new liver! I’ll try the argon..." + (show)
@jackiez

Thanks Athena and congrats on your continued success with your new liver! I’ll try the argon oil. My Transplant coordinator and team suggested only external applications because a biotin supplement can mess with my Tacro level. So I’ll deal with the shedding for now and try the argon oil. The med change in Feb should help too!

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@jackiez, I want to extend my welcome to Connect. Congratulations on your 8 month/almost 1st year with your new heart/lung transplant.
I had a liver/kidney transplant in 2009. I was able to take biotin when I asked about my thinning/wirey/dry hair and my discolored thinning fingernails. I also was told to be sure to get enough calcium.
Jackie, I asked my hairdresser, who caters to cancer patients, about hair products. She recommended that I use gentle shampoo and conditioners that were on the market for cancer/chemo patients. I don't remember the brands, but she got them for me from her suppliers. You might try looking around for someone trained and experienced in the cancer cosmetics for some suggestions.

I am still doing well on Tacrolimus and Cellcept. My dose has been lowered over time and I have been at a stable trough level with an established recommended dose that works for me. I do still experience trembling on occasion, usually within 2 hrs of taking my morning dose. For me it is only bothersome when my husband will notice it and say, "Your hands are trembling". (as if I didn't know it)

@jackiez Have your transplant told you that they want to change from Tacrolimus? or is this something that you are going to suggest to them?

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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?

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4 replies
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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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
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/

REPLY
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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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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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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