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

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.

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! 😊

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!

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!

@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.

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!

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.

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!

@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.

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.