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

Hi, My transplant was 11 years ago. I lost all the hair on my body with the exception of the hair on my head! ! It became finer but has gotten better with time. The hair on my legs came back eventually but it is very very sparse. Retained my head hair even through interferon treatments. It certainly surprised me that it did not fall out like the rest of my body hair did. What did happened was very severe discoloration of my legs and arms as if every vein had broken It took years to begin to get better, even now there is some discoloration, but I am alive! The most important thing!

Hi @shepn7 😊
I am a two year post kidney transplant patient. I take Cellcept and Tacronlimis. My hair was coming out in handfuls. I decided to change my hair style. Not quite as short as the handsome @scottij buzzcut #2 but I did go shorter. I am pretty sure it's the Tacronlimis. The biotin did not help me. I am curious, why was your Tacronlimis dosage increased?
Thank you for sharing @shepn7

I did start biotin and it takes awhile to start working but my hair has thickened enough that it is noticeable. Does not work for everyone. Good luck!

Hi @karen51 😊
Nice to meet you. Are you a kidney transplant on Cellcept and Tacronlimis? Approximately how long did you take biotin before you started to see some difference in your hair?
Thank you!

Hi, Jackie-heart and lung transplant April 2021. Also had very thin hair due to Tacro. Eventually I got a wig (I call it my Party Hair) for when I go out to dinner or an event. My naturally baby fine hair got thinner but wasn’t all gone. So around home and such it was ok for me. I actually grew to like the wig because it’s so easy! I’m off Tacro now and on Sirolimus. My stick straight hair has come back curly! For humid Midwest summer days this is all new to me! But I just go with it.
My transplant Drs didn’t want me taking Biotin because of the interference with some of the labs. So that’s why I just went to the wig.

I am about 3 years out and had regrown hair, but am severely thinning again —Dr thinks gvhd? I finally gave in and got wigs. Both Pinkhearrts and e beauty offer free wigs online and there may be local groups In your area that does as well. I know there is in Phoenix. Not the ideal but at least it’s something.

@shepn7 my liver transplant was almost 10 months ago. I take tacrolimus and Cellcept. I noticed my hair thinning and feeling straw- like about 2 months ago. It didn’t come out in clumps but I had to call the plumber and get special drain nets. There were long strands of my shoulder length brown hair on my pillow each morning. My transplant team approved use of biotin 1000 mcg each day, with a reduction to 5000 mcg when I could feel a difference. It’s worked like a champ. My hair is still straw like but it’s full and I’m told the texture will get better. I use shampoo every other day where it used to be everyday. If I can get away with it it’s every 3 days. The unintended consequence of biotin is my nails grow like weeds and I’m a short nails person. Good luck to you. It’s very challenging to lose one’s hair like this.

Hi @katebw 😊 I am happy to hear that you had such a nice result from taking biotin! About how long did you take biotin before you started to see an improvement? I also take Cellcept and Tacronlimis with significant hair loss. What dosages are you currently taking of Cellcept and Tacronlimis?
Thanks for sharing your story!

Liver transplant. On a very small dosage of tacrolimus. It took probably 6 months of faithfully taking the suggested dosage every day. I also use a very wide tooth comb and massage my scalp which may or may not work, just feels good.

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!