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

Hi @hello1234,
My transplant and bilateral nephrectomy for PKD was 12/7/20, so I am a bit over 1 year post. My Tacrolimus was just reduced to 2 mg am and 1 mg pm. I was very sick with Noro Virus and C. Diff mid February. I am much better, but need to revert to toast and rice off and on. Thankfully, I work from home now! I thought I was losing a bit of hair right before TX, but nothing like after. I avoided dialysis by getting a preemptive living donor transplant, but my function was getting very low. I hope your surgery goes well! It’s wonderful you don’t need it anyone!

Hi @jennifer0726 and @mollyv 😊 You both definitely gave me some hope....THANK YOU BOTH! I was told that Tacronlimis has hair loss as a definite side effect but I also think you are correct that the trauma of major surgery may contribute too. How many years post transplant are you and what dosage of Tacronlimis do you take? I take 6mg Envarsus XR once a day long-acting and it will be two years in July. I am getting ready for surgery to ligate (shut off) my hemodialysis fistula in two weeks so I think that stress may also be contributing to my significant hair loss. I am not looking forward to surgery of any kind. I am hopeful that my hair loss is not permanent hair loss because I can see my scalp in the front of my head very clearly. Thank you again for letting me know your experience with hair loss. You were both super helpful in providing me a reason to be optimistic.
Jen, how are you feeling since your illness in February. Are you feeling better now?

I was losing hair like crazy after transplant, and my team allowed me to take biotin. They said it was the Tacrolimus. The trauma probably contributed to it as well. It did eventually slow down and started filling in some. However, after I was sick in February I noticed it has started coming out more again, but not the handfuls that it was at first post transplant. Tacrolimus, stress, illness, weight loss, so many things can contribute in addition to normal cycles of shedding. Perhaps talk to your team?

A lot of hair loss!

I lost a lot of hair during the first couple of years after transplant, but then it stopped on its own and now I have my usual thick hair. I thought it may have been from the “trauma” of major surgery. I’m on tacrolimus, but had not heard hair loss as a side effect. I think my team told me it was normal.

Interesting as I had not heard of that side effect, myself it's been 4 years and I do keep my hair pretty short but can't say I've notice any loss. But I've also realized over the years how different we all respond to the different medications.