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

@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!

nitazoxanide saved my life with losing 30 pounds after noro for 30 days and catching covid from the hospital. I know am struggling bas from neuro issues noro/covid. I am JC positive and just had a 7t MRI and lumbar Monday.

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!

@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!

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!

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?

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.