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

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.

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.

A lot of hair loss!

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?

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?

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!

@jennifer0726 Congratulations on your pre-emptive transplant in 2020! My transplant was July 2020. I got in the habit of taking my 500mg bid Cellcept and Tacronlimis dosage with food. I am pretty sure if I took the Tac on an empty stomach my dosage would be closer to your low dose. Do you also take 500mg or 1,000mg bid Cellcept with your Tacronlimis?
I was surprised to hear you had Norovirus since I always think of that as the "Cruise Ship" virus. How did you get your Norovirus? I am happy to hear you are on the mend with only an occasional return of your symptoms. I heard that virus takes a while to completely resolve but in time it does, which is the good news. Also, I am happy that you are working from home rather than going into an office. Much safer.
Thank you so much for sharing your experience with me!

@hello1234 Thank you for your kind words. We both had pandemic transplants. 🙂
The Norovirus was likely from delivered pizza-formerly safe-but found out later was circulating in community. We thought at first it was food poisoning. My son and I became sick at exact same time next morning. He got better in about a day-but not me. Mine morphed into C. Diff which is far more dangerous to us post TX people. I had to give a sample to find out what was causing my symptoms. I probably should have gone to ER-but did not know how to with such extreme symptoms. Plus Omicron was in full swing at that time. I was lucky to recover at home-often transplant recipients end up in the hospital with C. Diff. Thankfully I was able to get Evusheld a couple weeks later, as previously I had zero antibodies to Covid even though I was vaccinated and boosted. Life with transplant is not exactly smooth sailing, but still so thankful! ❤️

Oh, and I take 750 mg am/500 mg pm Cellcept.

@jennifer0726 Your story about delivered pizza is the reason my family calls me "overly neurotic" about food safety. Before my transplant, I literally ate almost all of my meals at restaurants. On the way to work, I stopped for breakfast, at lunch I would go out with my girlfriends at work and at dinner I would go out. Since my transplant, I have not eaten one meal out and I really miss it.... but I am scared of unsanitary conditions in the kitchen and unwashed hands making the meals now that restaurants are so desperate for help (inexperienced and untrained in the basics). Do you ever eat out or get take out now? If so, what do you order and where do you go? .... Or are you too scared to eat out like me? You are correct that there are definitely challenges being immune suppressed, but we are both super grateful!! ❤