1. < Transplants

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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katebw | @katebw | Aug 12, 2022

@hello1234 i take 2 mg tacrolimus twice a day, and I’m in a special formulation of Cellcept as the original kind went rough on my stomach so I take 2 tabs of 180 mg twice a day. With biotin 1000mcg it took about 2- 3 weeks to see a real difference and it seemed then to happen quickly with my hair quite thick and my nails growing rapidly. Now I take 500 mcg a day and I’ll finish the bottle eventually every other day and stop and see what happens.

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hello1234 | @hello1234 | Aug 12, 2022

Thanks so much for your detailed response @katebw 😊 I think I am going to give biotin another try! I am definitely inspired by your success with it. I have shoulder length brown hair too...all over my pillow and down the shower drain. It's most certainly worth another try.... Thank you!

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Karen51 | @karen51 | Aug 12, 2022
In reply to @hello1234 "Thanks @karen51 😊 I am taking 6mg Envarsus XR each day (Tacronlimis) to achieve my 6..." + (show)
@hello1234

Thanks @karen51 😊
I am taking 6mg Envarsus XR each day (Tacronlimis) to achieve my 6 to 8 Tacronlimis blood level. So maybe it's the amount of Tacronlimis I am taking that is effecting my hair loss differently. How much Tac do you take daily? Are you also trying to be in the 6 to 8 Tac blood level? I am a kidney transplant so I am unfamiliar with the blood levels needed for a liver transplant. I think I may am give biotin another shot now that you actually had some success!

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I am taking half what you do. 1.5mg twice a day. I took more at first but was gradually lowered from starting at 6 or 5 going to 4 then 3mg. Mayo wants my tac level to be at 5. I consistently stay at that level. They are balancing my amount with my tac blood levels, the least amount needed the better!

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1 reply
hello1234 | @hello1234 | Aug 12, 2022
In reply to @karen51 "I am taking half what you do. 1.5mg twice a day. I took more at first..." + (show)
@karen51

I am taking half what you do. 1.5mg twice a day. I took more at first but was gradually lowered from starting at 6 or 5 going to 4 then 3mg. Mayo wants my tac level to be at 5. I consistently stay at that level. They are balancing my amount with my tac blood levels, the least amount needed the better!

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Hi @karen51
Since my transplant, even at the hospital, I started taking my Cellcept and Tacronlimis (and all the other meds like Bactrin, Valcyte, etc) with food to try and protect my stomach a little. I think the food probably means that I am taking more Tac to reach my target blood level. I eat my morning oatmeal and then take my meds. I think you are right that I could take less Tac if I stopped taking it with breakfast. I think I will discuss this with transplant during my anniversary visit to see if it would possibly make a difference to my hair loss.
Thank you for all your good info and Congrats on your transplant! 😊

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deakinoh | @deakinoh | Nov 9, 2022

My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list and no pain. In the hospital 2 days. I tolerated Prograf and Cellcept well until about the 2nd month then diarrhea set in. I couldn’t leave the house. Changed to myfortec with no better results. Doctor changed my Cellcept to inmuran. All is well my labs are making progress. Lots of energy! However, I’m now experiencing weight gain (even though I am walking 2 miles a day) and hair loss. Doctor said I won’t go bald or need a wig. I’m so thankful but the weight and hair loss is getting the best of me. Trying to stay grateful and positive. Comments are welcome. I just need someone that understands.

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3 replies
arqui02000 | @arqui02000 | Nov 9, 2022
In reply to @deakinoh "My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list..." + (show)
@deakinoh

My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list and no pain. In the hospital 2 days. I tolerated Prograf and Cellcept well until about the 2nd month then diarrhea set in. I couldn’t leave the house. Changed to myfortec with no better results. Doctor changed my Cellcept to inmuran. All is well my labs are making progress. Lots of energy! However, I’m now experiencing weight gain (even though I am walking 2 miles a day) and hair loss. Doctor said I won’t go bald or need a wig. I’m so thankful but the weight and hair loss is getting the best of me. Trying to stay grateful and positive. Comments are welcome. I just need someone that understands.

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Tu belleza está por dentro perder el pelo no es importante subir de peso si tienes q controlarlo hay que dar gracias a Dios que nos da un día mas de vida

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mollyv | @mollyv | Nov 10, 2022
In reply to @deakinoh "My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list..." + (show)
@deakinoh

My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list and no pain. In the hospital 2 days. I tolerated Prograf and Cellcept well until about the 2nd month then diarrhea set in. I couldn’t leave the house. Changed to myfortec with no better results. Doctor changed my Cellcept to inmuran. All is well my labs are making progress. Lots of energy! However, I’m now experiencing weight gain (even though I am walking 2 miles a day) and hair loss. Doctor said I won’t go bald or need a wig. I’m so thankful but the weight and hair loss is getting the best of me. Trying to stay grateful and positive. Comments are welcome. I just need someone that understands.

Jump to this post

@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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1 reply
cmael | @cmael | Nov 10, 2022
In reply to @deakinoh "My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list..." + (show)
@deakinoh

My May 20, 2022 kidney transplant was great. No dialysis, only 102 days on transplant list and no pain. In the hospital 2 days. I tolerated Prograf and Cellcept well until about the 2nd month then diarrhea set in. I couldn’t leave the house. Changed to myfortec with no better results. Doctor changed my Cellcept to inmuran. All is well my labs are making progress. Lots of energy! However, I’m now experiencing weight gain (even though I am walking 2 miles a day) and hair loss. Doctor said I won’t go bald or need a wig. I’m so thankful but the weight and hair loss is getting the best of me. Trying to stay grateful and positive. Comments are welcome. I just need someone that understands.

Jump to this post

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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1 reply
deakinoh | @deakinoh | Nov 11, 2022
In reply to @mollyv "@deakinoh I lost what felt like a ton of hair post-kidney transplant. I am also on..." + (show)
@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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deakinoh | @deakinoh | Nov 11, 2022
In reply to @cmael "My transplant was 4 1/2 years ago. I was also losing hair. It’s not uncommon after..." + (show)
@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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