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

That’s amazing! Congrats on your transplant. I think they give anti virals for JC and reduced immunosuppressants. I had anti body mediated rejection to my donors DNA. I’ve heard of people getting 30 years out of their kidney’s! I hope we both get many decades.
They reduced cellcept and they may eliminate is based on the results of Lumbar.

I’m on Prograf 1MG AM and 2mg night
Cellcept 250 AM- 250 PM

JC is a blood test they have to send out. It shows antibodies for JC virus. I’ve had a lot of issues since I had noro/covid with muscles firing non stop and spasming. It has been super weird. I had a few spots on my MRI that were unspecified.

My original kidneys failed from a genetic mutation. How about you?

Hi @mott1090 😊
Congrats on your second kidney transplant in 2021! I received my kidney transplant in 2020 (duringthe height of covid).
Eight months after my transplant, I developed CMV and then a few months later, I developed BK virus. I never heard of JC before, but it sounds like it's probably treated like my BK virus.
Did you have a reduction in your immune suppression meds to fight the JC? Also, how did you know that you had JC? (When I had CMV and BK, they were both identified with a blood test).
Did you need a second kidney transplant due to chronic or acute rejection...or something else? It sounds like you had 10 good years with your first transplant and here's to another good run with your new transplant!!

It’s a pleasure to meet you too!! I had a kidney transplant in 2011 and 2nd kidney transplant in 2021. No, I don’t have issue with osteoporosis.

JC positive is a virus that most people can acquire anytime but usually as a kid. Your body can fight it and keep your levels suppressed, but with anti rejection meds it sometimes will break through. The fear is JC + can create PML (attacks sheathing of brain).

Hi @mott1090 😊
It's a pleasure to meet you! I am so sorry to hear about your terrible experience with norovirus and covid.....and now an MRI of lumbar. Which organ did you have transplanted? Do you take a medication for osteoporosis?
What is JC positive?

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.

It is scary! I mostly eat at home, but occasionally get drive thru, eat out at times when it is less busy like right at opening or mid afternoon. I never eat fresh fruit, salads or veggies out-food must be HOT. The pizza had always arrived very HOT, but it must have been handled by someone with unclean hands. I have groceries delivered to avoid busy stores. I rarely shop in a store anymore. But, I also think we cannot live completely isolated. I am home most of the time since I work here, too. Sometimes I just go for a ride to get out without going in anywhere! Right now I am longing for a pedicure, but nervous about going. Hopefully someday travel will be possible!

@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!