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

...mannn I just got my transplant last month. Noticed a bit of thinning and hair on pillow and such. Ya'll telling me I'm about to go BALD?? I've tried it before, my head is quite decidedly not shaped for it...

Is there no alternative medication or anything? I'm 31 now, was hoping to keep my hair for at least another 5 years lmao.

Yes, Tracolimus does a number on hair. After kidney transplant in Dec 2022, hair also fell out in chunks. IT was frightening and yet thank goodness for hair wraps dealing with this situation made it more bearable. Only things was that people automatically assumed I had Cancer and was doing chemo.

Boitin in my opinion does nothing. This is only my opinion. IT maybe different for others. Generally according to my nephrologist team of doctors hair will start to regrow after 5-6 months. This may vary from person to person. IF trying biotin , I found the vitamins perhaps worked better to kick start hair growth.

Don't be surprised I hair comes. out curly. Yes. perhaps rare but it happened in my case. I also have jet black hair and it grew back silver grey. I wasn't psychologically ready to be grey but grateful hair grew back. A few months of adjustment yet I am ok with it now. Once your meds are reduced, yes this make a great deal difference. Tremors also subside. NOT go away completely yet more tolerable. Best of luck and hopefully if my number are normal my doctors will wean me off prednisone. Best of luck. Spring is around the corner and things will get better especially being able to go outdoors.

Hi @joly 😊
It's so very nice to meet you! Yes, you are correct. I am hearing a lot of positive news regarding the reduction of immune suppression meds for liver transplant patients. That's wonderful! I was told by a doctor, that rejection is not as concerning for a liver transplant as it is for a kidney transplant. Because the liver has regenerative powers, at the first sign of rejection the meds can be increased if necessary and the damage is normally not permanent.
With a kidney transplant, any damage is normally permanent and then causes stress on the remaining function.
So the nephrologists are not as liberal as the hepatologists regarding reduction of immune suppression meds. It's exciting to hear that you under the care of a doctor who is well-versed on this new trend. Please keep us posted on what you learn!

Hi ! I’m sorry you are experiencing this problem. However, I also think you will find a solution soon.
I stopped taking Tacrolimus in June 2022. My transplant was in September 2019. My hepatologist has been a forward moving doctor in the study of reducing dosage on immunotherapy. We had already reduced its dosage with no medical alerts. I still take Mycophenolic Acid twice daily but stopping the Tacrolimus has helped my labs look better and they were good already. There is a nice presentation of reducing even stopping those type of medications on the Dallas Baylor Scott and White hospital Simmons transplant center website you might find
You will find a solution !

Hi @blbird33 😊
My neighbor told me about the biotin shampoo and conditioner. I bought it and had the same result as you. Not good. I went back to my tried and true WEN set almond cleansing conditioner, that I buy from QVC. I always used it before my transplant.
I think it's very gentle and it seems to be stabilizing my situation. It doesn't help with regrowth against the "Tacronlimis effect", but it seems to be keeping my current hair situation quiet. My hairdresser commented last week that there was no hair in her brush and it appears that I am not currently losing a significant amount hair. She was excited!
I take that as a major accomplishment. 👍

Well, it seems that I am losing more hair using the Biotin shampoo and conditioner. It just falls out all day long all over my clothes. Anyone else try this and not have success? I am trying patience and staying grateful for my wonderful sparkling new kidney! Thanks, BB

I am trying the Biotin Luseta shampoo and conditioner for significant hair loss since my transplant in 10/23/22. I will see if it works over time. I wanted to ask if others used this shampoo and if it worked? And if you took the Biotin over the counter supplement instead, what dose did you take? I asked my TC and the Neph just stated it was ok to us the supplement or the shampoo. My hair is falling out quite a bit all day long. Thank you, BB

Rosemary, thank you. I will let you know how the biotin shampoo works. Hope it does. Yes, patience certainly patience is a virtue, and one I daily work on. I welcome good hair days! What was the oral biotin name and doseage? I will ask my doctor too. THanks for the support, BB

BB, I didn't know there was a biotin shampoo! I absolutely love how we can learn from each other. Thanks!
I'm sure you already have learned the value of patience, and that will be an asset as you wait and watch and hope for improvement. I don't remember how long it took until I noticed an improvement. I'm still not sure if it was the oral biotin or the post transplant recovery that are responsible, but my hair is definitely healthy now.
BB - I hope that there will be some good hair days ahead for you.

My transplant center told me about Biotin shampoo as being ok. I will see how well it works. And will ask my dermatologist about a Biotin supplement doseage and brand, then get it ok's at my transplant center. Thank you, BB