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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@gaylea1

@jolinda I also had hair loss post transplant and started taking biotin. Within a few months the hair loss ended and it has gradually started coming back.

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

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@jolinda

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?

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I had a heart Tx 17 years ago. I now take 0.5 mg of tacrolimus twice a day, and 1000 mg of cellcept twice a day. Never have had rejection and no drug side effects.

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

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@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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@ladydidehart

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

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@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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@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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@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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@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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@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?

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@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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@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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