Hair loss after transplant, probably Tacrolimus: Anyone change meds?

Posted by hello1234 @hello1234, Mar 26, 2022

In the beginning, my hair loss seemed minimal and I took Biotin supplements. Now, approaching my 2nd anniversary for my kidney transplant, my hair is coming out in gobs. I believe it's probably the Tacronlimis. If you had this problem, what did you do to solve it? Rogaine for Women, Hairmax laser comb, change your medication, or something else? Please let me know your experience (I think I am going bald).
Many thanks!

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Profile picture for hello1234 @hello1234

@jennifer0726 Your story about delivered pizza is the reason my family calls me "overly neurotic" about food safety. Before my transplant, I literally ate almost all of my meals at restaurants. On the way to work, I stopped for breakfast, at lunch I would go out with my girlfriends at work and at dinner I would go out. Since my transplant, I have not eaten one meal out and I really miss it.... but I am scared of unsanitary conditions in the kitchen and unwashed hands making the meals now that restaurants are so desperate for help (inexperienced and untrained in the basics). Do you ever eat out or get take out now? If so, what do you order and where do you go? .... Or are you too scared to eat out like me? You are correct that there are definitely challenges being immune suppressed, but we are both super grateful!! ❤

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I had a transplant 4 months ago, and my kidney is working fine, but I have had many other complications. To name a few, Covid, BK, virus, blood clots, and neutropenia. I’m still able to go about my daily life, for now, and I feel good, but I am losing my hair too. I take Biotin, Calcium, D3, multiple vitamins and eat pumpkin seeds. I don’t know if this will help, but we shall see.

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Profile picture for deakinoh @deakinoh

Thanks for the shampoo/ conditioner information. It’s forth a try. I also color my hair. I suppose that doesn’t help.

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@deakinoh, I don't color my hair, but others do and have expressed their concerns and have also shared their experiences. You will want to read what others have shared in this discussion. It is a short one, and you can easily read the posts in order from the beginning:

Can I color my hair after transplant?https://connect.mayoclinic.org/discussion/hair-dye-after-transplant/

Have you colored your hair since your transplant?

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Profile picture for Rosemary, Volunteer Mentor @rosemarya

@deakinoh, I also had thinning hair after my transplant, and took biotin after talking to the dermatologist during my return to Rochester for my 1st follow-up appointment at Mayo. My hair dresser also recommended using a gently shampoo and conditioner that she supplied for her cancer patients. So in addition to the gently combing and brushing, that is something that you might want to consider.
I also had damaged fingernails after transplant. They had turned paper thin beforehand and they grew out afterwards. So I had old ones growing out, and new ones coming in. The doctor also said biotin is good for nails.

Have you noticed a change in your hair texture?

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Thanks for the shampoo/ conditioner information. It’s forth a try. I also color my hair. I suppose that doesn’t help.

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My hair was FRIED for months after transplant and then I lost most of it for about a year. Once I was just down to my tacro dose it seemed to grow back better than it had been in many years. Just be patient. Your body is still recovering and is using the nutrients for the most important healing first. You’ve been through something very huge. Give your body time to recover ❤️

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Profile picture for deakinoh @deakinoh

I started the Biotin a couple of weeks ago. I’m trying be gentle when washing and brushing. I hope you continue to see less hair loss.
Blessings

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@deakinoh, I also had thinning hair after my transplant, and took biotin after talking to the dermatologist during my return to Rochester for my 1st follow-up appointment at Mayo. My hair dresser also recommended using a gently shampoo and conditioner that she supplied for her cancer patients. So in addition to the gently combing and brushing, that is something that you might want to consider.
I also had damaged fingernails after transplant. They had turned paper thin beforehand and they grew out afterwards. So I had old ones growing out, and new ones coming in. The doctor also said biotin is good for nails.

Have you noticed a change in your hair texture?

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Profile picture for crystalfaye @crystalfaye

I’m five months post liver. About six weeks ahead I started losing a lot of hair. The team put me on Biotin and within two weeks I could see a difference that the hair was
not falling out as much.

Also had hair loss right after transplant. A lot but it stopped within a few weeks.

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I started the Biotin a couple of weeks ago. I’m trying be gentle when washing and brushing. I hope you continue to see less hair loss.
Blessings

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My hair loss didn’t start until 6 months post kidney transplant (May 20, 2022). It’s not bad but is still troublesome. Ladies, keep the faith. It’s totally out of our hand. I’m thankful, grateful and blessed
Merry Christmas

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I’m five months post liver. About six weeks ahead I started losing a lot of hair. The team put me on Biotin and within two weeks I could see a difference that the hair was
not falling out as much.

Also had hair loss right after transplant. A lot but it stopped within a few weeks.

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Profile picture for cmael @cmael

My transplant was 4 1/2 years ago. I was also losing hair. It’s not uncommon after a trauma from major surgery. I saw on this support group that some people took biotin to help with hair growth. I checked with my transplant team. The pharmacist sent me a message to take 1000 mgs a day. I did take it and my hair came back to normal. I stopped taking it after a year or less. My hair is still the same as presurgery.
I take tacrolimus and Cellcept.

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Thanks for the information. I am going to start Biotin. Good luck to you on your journey. This is all new to me so it helps to hear someone else’s journey.

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Profile picture for mollyv @mollyv

@deakinoh I lost what felt like a ton of hair post-kidney transplant. I am also on Tacrolimus. It settled down about 6 months after the transplant. I never went bald, no one else noticed and I continue to have a thick head of hair! Be patient - this too will pass.

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Thanks for the information and encouragement. I found it strange that I started losing hair at six months and not earlier. I am going to start the biotin. Have a great day!

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