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

@blbird33 I am not sure if it affected my Tac levels, they are more stable now and before there were bigger swings. I think the negative thing I read was on one of my follow up kidney biopsy appointment instructions it said to stop taking biotin prior to the appointments. That made me think it could be affecting my labs. So I decided to stop taking it and did not see any increased hair loss in doing so. I truly think it just takes time, about 6 months to see major improvement. It will get better!

Crystalfaye, did you experience any side effects from the Biotin supplement? I am fearful to take another med, as I do not want it to affect the Tacro levels or other med levels. Thank you, BB

I bought the Biotin gummies 5000 mcg, but got fearful taking another med. Fearful it would interfere with the Tacro and other meds. Did you experience any side effects of taking the Biotin supplement? I think it takes several months to see any change. Thank you, BB

In addition to a Biotin supplement I also use Joico volumizing shampoo. The two work together pretty well!

@3kidneyshammy hello and congratulations on your new transplant! I was losing handfuls of hair post transplant and bilateral nephrectomy for PKD and they recommended biotin. I took it for a while before reading something negative about biotin, (cannot remember exactly what that was, but I quit taking it) not sure the biotin helped or if it was just Time. Even though Tac may contribute to this I personally think the trauma of the surgery is a huge part of hair loss. My hair slowly started filling in by 6 months and was doing somewhat better until January when I had a procedure with general anesthesia. Since then I have been losing some again, but not to the extent I was post transplant. I think it was the anesthesia and anxiety that caused it in Jan. I know it is hard to experience the hair loss, but it typically will get better. So many changes happen with a transplant. I did buy this Joan Rivers compact powder with brush that I used sometimes immediately post transplant to cover my silver outgrowth which also helped with making the thinning look less. My transplant was 12/7/20 a little over 2years ago. Hang in there, it will get better!

yani2023, Maybe I need hair wraps. I think they are fabric wrapped around your hair at night. Correct me if I am wrong. I will find one or make one and see if it helps. Thanks for the idea. Just had Tacro dose increased at now my 4th month Post Transplant due to Tacro levels getting too low. I also had white blood cell level go too low as well. Anyone else have these decrease? They reduced my Myfortic and increased my Tacro. I really have to work at calming down during the day as the Tacro causes more tremors and anxiety shaking. But I love my new kidney too. I am grateful and some days drink camomille tea to help calm me. One doc told me to increase the Metoprolol to help reduce tremors. Have a very good day and thank you. Glad to hear from you, BB

Welcome to Connect, @3kidneyshammy . And congratulations on your recent kidney transplant.
I get it! that you (and other members) are concerned about the hair. I can remember when my hair and my finger nails were brittle and thinning after transplant. However, in looking back to 2009, I remember that my hair and finger nails were brittle during my pre-transplant months, but due to my circumstances, I was too bothered by other serious symptoms to realize it. After a successful liver and kidney transplant, it took almost a year for me to feel comfortable with the condition of my hair and nails again.

Your kidney transplant was only one month ago, and your body is still recovering. Speak with your transplant team about any of your questions and concerns as you continue to recover. And keep in mind that your medication are stronger during the early post transplant period, and will be adjusted by your team as time passes. Your doctors will be using your labs results to determine what is the best medicine for you. Each of us is treated as an individual.
3kidneyshammy, How is your overall recovery coming along?

Biotin has helped me with my hair loss. It was recommended by my Transplant Team.

Hi @3kidneyshammy 😊
It's very nice to meet you! Congratulations on your recent kidney transplant!
You will not go bald, the Tacronlimis just makes your hair thin. There are alternative medications but they come with their own set of adverse effects. Tacronlimis is the favorite medication, especially for a new transplant, since it does an awesome job at preventing rejection. If for any reason you have an extreme loss of hair, make sure to report it to your transplant nephrologist doctor and they can recommend a substitute like Cyclosporine, etc. Matter of fact, the next time you speak with your transplant nurse, maybe ask to see if she recommends something benign like a biotin supplement. Some people have expressed that biotin was helpful. I didn't see a big difference. My hair is definitely a lot thinner than it was, but I am staying with Tacronlimis for now. How is your brand new transplant going so far?

...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.