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

Posted by hello1234 @hello1234, Mar 26, 2022

In the beginning, my hair loss seemed minimal and I took Biotin supplements. Now, approaching my 2nd anniversary for my kidney transplant, my hair is coming out in gobs. I believe it's probably the Tacronlimis. If you had this problem, what did you do to solve it? Rogaine for Women, Hairmax laser comb, change your medication, or something else? Please let me know your experience (I think I am going bald).
Many thanks!

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@mott1090

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.

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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?

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@hello1234

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?

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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).

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@mott1090

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).

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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!!

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@hello1234

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!!

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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?

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@mott1090

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?

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Hi @mott1090 😊
My transplant doctor reduced my Cellcept to 250mg bid also when I developed BK virus so it sounds like the treatment is similar. (But there was no antiviral for the BK, just reduction of the immune suppression meds.)
I recently went "negative" in the blood and significantly less BK viral load in the urine, so the reduction solved the problem.
Now I think I understand what you meant by a lumbar test. I thought you may be referring to osteoporosis, but it sounds like a type of spinal fluid test for JC virus. Is that what the lumbar test is? When will you receive the results?

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@blbird33

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

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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

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@mh75

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

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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

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@blbird33

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

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How long ago was your transplant? Just curious to know how long you’ve had tremors. The propranolol (10mg /2x day) has helped me with my tremors and my headaches. Afain I’m on Envarsus XR (4mg per day)

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Yes I am losing my hair too, I will take to my doctor,

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@blbird33

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

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Hi @blbird33 😊
I am a three year post kidney transplant patient that takes Envarsus XR too. Which meds and dosages do you take in addition to Envarsus XR?

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