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

Good to hear from you! I am on Envarsus XR 0.75 times 3 tablets. I still have tremors but much less. Do we just resign ourselves to living with these shakes, being unable to type easily on the computer, trying to lessen tremors by taking anxiety meds? Dr, Peddi told me if Envarsus XR does not work for me he would help me find a med that would work. I am getting to that point maybe. Anyone else change off Envarsus XR? Side Effects of new med? I may be trading one bad experience for another. Ideas? Not an easy journey. And grateful for new kidney too. Blessings, BB

I had a kidney transplant 6 months ago (01/23) and I noticed significant hair loss start around the 4 month mark post transplant. Now at 6 month post , the hair loss is pretty bad, I was told by transplant team to use Biotin to see if it helps. Around the same time (3-4 months post op) I had extremely low white cell counts and they put me on Neupogen injections ( 1 per week /for 4 weeks) u don’t t know if this had anything to do with hair loss but that’s when I started to notice it. I’m also on ENVARSUS XR (4mg ) , prednisone (5mg) and Mycophenolate (cellcept 100mg /2x day) honestly my body has not taken ENVARSUS / Tacro well at all , I’ve had really bad tremors and headaches everyday so that’s when they switched me to ENVARSUS XR which helped a little with tremors and for the headache they put me on Propranolol (10mg/ 2x day) that has helped with the headaches. I’m very grateful for my new kidney but it has been challenging at times with the meds I am on. I don’t feel my best yet but I’m hopeful I will eventually. Best of luck to everyone

yani2023, Maybe I need hair wraps. I think they are fabric wrapped around your hair at night. Correct me if I am wrong. I will find one or make one and see if it helps. Thanks for the idea. Just had Tacro dose increased at now my 4th month Post Transplant due to Tacro levels getting too low. I also had white blood cell level go too low as well. Anyone else have these decrease? They reduced my Myfortic and increased my Tacro. I really have to work at calming down during the day as the Tacro causes more tremors and anxiety shaking. But I love my new kidney too. I am grateful and some days drink camomille tea to help calm me. One doc told me to increase the Metoprolol to help reduce tremors. Have a very good day and thank you. Glad to hear from you, BB

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!