1. < Transplants

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!

Interested in more discussions like this? Go to the Transplants Support Group.

l0lag0lag0b3 | @l0lag0lag0b3 | Feb 1, 2023
In reply to @hello1234 "Hi @l0lag0lag0b3 😊 It is great to hear from you! You are giving excellent advice! You..." + (show)
@hello1234

Hi @l0lag0lag0b3 😊
It is great to hear from you!
You are giving excellent advice! You are correct that the transplant team knows "the scoop" about the donor match, etc.
Do you take your Tac with or without food (5 to 7 level)? Are you also taking 5mg Prednisone and 500mg bid Cellcept?

Jump to this post

Take my meds after breakfast & Dinner from day 1 of transplant (Reco. from Transplant team)

REPLY
hello1234 | @hello1234 | Feb 1, 2023

Thank you @l0lag0lag0b3 😊
Do you take Prednisone too?

REPLY
1 reply
scottij | @scottij | Feb 1, 2023
In reply to @hello1234 "Congrats @scottij 😊 It's always so great to hear from you! Happy to hear your #1..." + (show)
@hello1234

Congrats @scottij 😊
It's always so great to hear from you! Happy to hear your #1 buzz cut went so well and your barber had such a glowing report of your head of hair!

Jump to this post

@hello1234 Ah but the glowing report was on my head, not the hair. Smooth, no bumps or wrinkles. She said most men can't pull off a buzz haircut. Now, hair loss and a buzz cut have to be easier on a man. I can't imagine the challenge if a woman is losing her hair.
Best always,
s!

REPLY
hello1234 | @hello1234 | Feb 1, 2023

Thank you @l0lag0lag0b3 😊 I think my meds may need to be adjusted to resolve my BK, and protect against rejection. I am hearing 5mg Prednisone and stopping the Mycophenole may be the next adjustment. I have lab work tomorrow to double-check my creatinine level and BK viral load. Thank you again for always being there for me!

REPLY
1 reply
l0lag0lag0b3 | @l0lag0lag0b3 | Feb 1, 2023
In reply to @hello1234 "Thank you @l0lag0lag0b3 😊 I think my meds may need to be adjusted to resolve my..." + (show)
@hello1234

Thank you @l0lag0lag0b3 😊 I think my meds may need to be adjusted to resolve my BK, and protect against rejection. I am hearing 5mg Prednisone and stopping the Mycophenole may be the next adjustment. I have lab work tomorrow to double-check my creatinine level and BK viral load. Thank you again for always being there for me!

Jump to this post

From what I have heard, typically to boost your WBC count to fight any infection, Mycophenolate is tapered down.. how much tapering is warranted is best determined by the transplant team or by a Transplant Nephrologist... who is experienced . Wishing you best outcome... hope you do better.

REPLY
1 reply
hello1234 | @hello1234 | Feb 1, 2023
In reply to @l0lag0lag0b3 "From what I have heard, typically to boost your WBC count to fight any infection, Mycophenolate..." + (show)
@l0lag0lag0b3

From what I have heard, typically to boost your WBC count to fight any infection, Mycophenolate is tapered down.. how much tapering is warranted is best determined by the transplant team or by a Transplant Nephrologist... who is experienced . Wishing you best outcome... hope you do better.

Jump to this post

Thank you so much @l0lag0lag0b3 😊
I am hopeful the transplant team will be able to figure out the meds. It will be nice to finally resolve the BK. (I was diagnosed back in August). Now I am concerned about the rising creatinine. Tomorrow
morning I will go for updated labs. It's a little stressful.

REPLY
bobinnevada | @bobinnevada | Feb 2, 2023
In reply to @hello1234 "Hi @bobinnevada 😊 My local nephrologist also said 4 to 6 is fine and the transplant..." + (show)
@hello1234

Hi @bobinnevada 😊
My local nephrologist also said 4 to 6 is fine and the transplant team said 6 to 8. When I spoke to the local doc office, they told me that you don't have to panic if occasionally you see a 4 or 5 in the mix.
My girlfriend had both of her PKD native kidneys removed after 1 year and things went very well. She was very nervous too, but everything turned out to be fine and the timeline the hospital gave her for recovery was shortened. She was home much quicker!
I have been dealing with BK for five months now. My Mycophenolate was reduced to 250mg bid, but not stopped. I don't take any Predisone. This week, my creatinine is up and GFR is down. I am going to be retested to confirm the numbers.
Not sure, what the next med adjustment is going to be. Maybe I will need a biopsy to determine rejection from reduced immune suppression or BK nephropathy. Not sure what the cause of the rise in creatinine is at this point.

Jump to this post

Hi Hello1234
Thank you for the input on the Tac levels. Also glad to here you girlfriends surgery went well, relieves a lot of anxiety for me.
As far as the BK virus, when I had it my copies were over 25000, fever, chills and creatinine was up, but adjustments to the meds they got it down to less than <500 copies which is acceptable. Took about 4 months for it to be undetectable.
BK is a common problem with transplants so stay positive, transplant teams are miracle workers..

REPLY
1 reply
hello1234 | @hello1234 | Feb 2, 2023
In reply to @bobinnevada "Hi Hello1234 Thank you for the input on the Tac levels. Also glad to here you..." + (show)
@bobinnevada

Hi Hello1234
Thank you for the input on the Tac levels. Also glad to here you girlfriends surgery went well, relieves a lot of anxiety for me.
As far as the BK virus, when I had it my copies were over 25000, fever, chills and creatinine was up, but adjustments to the meds they got it down to less than <500 copies which is acceptable. Took about 4 months for it to be undetectable.
BK is a common problem with transplants so stay positive, transplant teams are miracle workers..

Jump to this post

Hi @bobinnevada 😊
Thank you so much for telling me your BK story! That really helps a lot! My current meds are 250mg bid Mycophenolate and 6mg Envarsus XR. What were your meds during your BK ? Are they the same now?
I am wondering if they may add Prednisone and take me off the Mycophenole completely. (With my rising creatinine, I am not sure if it's the BK or beginning of rejection). Thank you again for telling me your story!!

REPLY
bobinnevada | @bobinnevada | Feb 2, 2023

Hi again
My meds during BK virus were Tac 1.5 mg BID,Cellcept 1000mg BID, Rapamune .5 Once a day, and predisone 5 mg once a day.
They took me off the cellcept altogether and slowly put me back as BK went down under 500 copies
Now I am on Tac 1 mg BID, Cellcept 500mg BID and predisone 5mg once a day

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.