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

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

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. 👍

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 @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!

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.

...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.

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?

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

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?

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