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.

azdan99 | @azdan99 | May 18, 2020
In reply to @tjgisewhite "@azdan99 first congratulations on your 17yr. heart. Second, what are you still taking the Cellcept for?" + (show)
@tjgisewhite

@azdan99 first congratulations on your 17yr. heart. Second, what are you still taking the Cellcept for?

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That is part of the protocol of the transplant center.

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azdan99 | @azdan99 | May 18, 2020
In reply to @danab "@azdan99 Hi and welcome to Connect, That is awesome 17 years post thanks for sharing and..." + (show)
@danab

@azdan99 Hi and welcome to Connect, That is awesome 17 years post thanks for sharing and such a low dose that's great.

I'm a Heart transplant also and now on my third year post. I too live in Arizona and got my Heart at Mayo Phoenix. I always appreciate hearing about others journeys and it sounds like you have had a successful journey since transplant.
Have a Blessed Day
Dana

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I had my transplant at UMC in Tucson. In 2003, it was the only transplant center in AZ. Dr. Jack Copeland was the chief of the CT group. He developed a very successful program.

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michaelswaim | @michaelswaim | May 16, 2020

I am lucky i guess. I've never had any side effects. For me they raise or lower my tacrolimus intake occasionally.

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ladydidehart | @ladydidehart | May 16, 2020
In reply to @contentandwell "@ladydidehart Hi, and Welcome to Connect. Congratulations on your transplant, you look fabulous for being 3..." + (show)
@contentandwell

@ladydidehart Hi, and Welcome to Connect. Congratulations on your transplant, you look fabulous for being 3 months post-transplant.

I had some hair loss also and biotin was recommended by my transplant team also, I think it must be fairly standard. Of course you should always check with your team before adding anything to your regimen. I do not recall the dosage that my transplant team recommended. The only caution about taking biotin is if you having a thyroid test, you should stop taking it a few days before. It does not cause any problems with the thyroid, just with the testing, and that depends on the type of test that the lab uses. Apparently there is more than one TSH test.
JK

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Thank you so much. My transplant pharmacist did suggest that it might help and my nurse coordinator sent me the message so I’m sure they’re fine with me taking it. It’s nice to hear from others who have actually been through it.

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JK | @contentandwell | May 16, 2020
In reply to @ladydidehart "Good morning! I’m 3 months post kidney transplant and doing very well!! Amen to that. My..." + (show)
@ladydidehart

Good morning! I’m 3 months post kidney transplant and doing very well!! Amen to that. My question is about my extreme hair shedding. It’s not chunks of hair loss, but more constant shedding of strands of hair. I’m not on Tachrolimus (sp?). I’m on Mycophenolate and Belatacept. Anyone else experience the same thing? How long does it last? Does Biotin or anything else help?

Jump to this post

@ladydidehart Hi, and Welcome to Connect. Congratulations on your transplant, you look fabulous for being 3 months post-transplant.

I had some hair loss also and biotin was recommended by my transplant team also, I think it must be fairly standard. Of course you should always check with your team before adding anything to your regimen. I do not recall the dosage that my transplant team recommended. The only caution about taking biotin is if you having a thyroid test, you should stop taking it a few days before. It does not cause any problems with the thyroid, just with the testing, and that depends on the type of test that the lab uses. Apparently there is more than one TSH test.
JK

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1 reply
ladydidehart | @ladydidehart | May 16, 2020
In reply to @rosemarya "@ladydidehart, After my liver and kidney transplant in 2009, I was taking cellcept, tacrolimus, and prednisone...." + (show)
@rosemarya

@ladydidehart, After my liver and kidney transplant in 2009, I was taking cellcept, tacrolimus, and prednisone. I experienced hair loss and nail problems.
At my first post transplant visit (5 months) I asked the dermatologist who was part of my roitine post transplant care team. He said I could take biotin and see if it helped. My liver and kidney teams were okay with me taking it.
The girl who cuts my hair said it was a result of the medications both before, during, and after transplant. She suggested some gentle shampoo and conditioner that her cancer patients liked to use.
Ask your transplant team what they think about it. Will you be returning to the transplant dept for a 4-5 month check-up?

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My transplant team pharmacist did say that Biotin might help but didn’t recommend a dosage, only that it should be USP. I will be reaching out to my hairdresser as well. Yes, I’m returning for a 4 month visit in a few weeks. I just wanted the perspective of people who had actually gone through this themselves. Thank you!

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 15, 2020

@ladydidehart, After my liver and kidney transplant in 2009, I was taking cellcept, tacrolimus, and prednisone. I experienced hair loss and nail problems.
At my first post transplant visit (5 months) I asked the dermatologist who was part of my roitine post transplant care team. He said I could take biotin and see if it helped. My liver and kidney teams were okay with me taking it.
The girl who cuts my hair said it was a result of the medications both before, during, and after transplant. She suggested some gentle shampoo and conditioner that her cancer patients liked to use.
Ask your transplant team what they think about it. Will you be returning to the transplant dept for a 4-5 month check-up?

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1 reply
ladydidehart | @ladydidehart | May 15, 2020
In reply to @tjgisewhite "@ladydidehart that is an answer you would have to get from your transplant team. Everyone is..." + (show)
@tjgisewhite

@ladydidehart that is an answer you would have to get from your transplant team. Everyone is different depending on what other health issues you have going on. I hope this helps.

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I did reach out to my transplant team and didn’t get the reassurance. They told me that since I wasn’t on tachrolimus they didn’t think it was related.

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Tammy | @tjgisewhite | May 15, 2020
In reply to @ladydidehart "This is reassuring to me since I’m just 3 months post transplant. How many mcg of..." + (show)
@ladydidehart

This is reassuring to me since I’m just 3 months post transplant. How many mcg of Biotin do you take per day?

Jump to this post

@ladydidehart that is an answer you would have to get from your transplant team. Everyone is different depending on what other health issues you have going on. I hope this helps.

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1 reply
Mentor
Dana, Volunteer Mentor | @danab | May 15, 2020

@azdan99 Hi and welcome to Connect, That is awesome 17 years post thanks for sharing and such a low dose that's great.

I'm a Heart transplant also and now on my third year post. I too live in Arizona and got my Heart at Mayo Phoenix. I always appreciate hearing about others journeys and it sounds like you have had a successful journey since transplant.
Have a Blessed Day
Dana

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