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

BB, I didn't know there was a biotin shampoo! I absolutely love how we can learn from each other. Thanks!
I'm sure you already have learned the value of patience, and that will be an asset as you wait and watch and hope for improvement. I don't remember how long it took until I noticed an improvement. I'm still not sure if it was the oral biotin or the post transplant recovery that are responsible, but my hair is definitely healthy now.
BB - I hope that there will be some good hair days ahead for you.

My transplant center told me about Biotin shampoo as being ok. I will see how well it works. And will ask my dermatologist about a Biotin supplement doseage and brand, then get it ok's at my transplant center. Thank you, BB

@blbird33
I don't know about shampoo, however I used oral biotin tablet/capsule. My dermatologist suggested the amount and my transplant team okayed it.
As for shampoo, my hairdresser who took care of cancer patients, recommended a gentle shampoo that she used and sold to them. I don't remember the name. Do you have such specialty beautician/hairdresser near you as a resource?

I have hair loss too from the Tacrolimus. What biotin shampoo do you all recommend to stop the hair loss? Thank you. BB

Hi, @2dogparent. Welcome to Connect. So, I read that you’ve been on tacrolimus for 11 years. Is that because you are a transplant recipient, or perhaps for another condition? I’ve been on it for 13 years because of my transplant. (Liver and kidney).

My hair was thinning after my transplant, but it has been doing well and continues to do so. I guess I inherited my mom’s genes instead of my dad’s! I also choose to use gentle hair products and do not color or get perm.
I am curious whether your current hair thinning is a sudden occurrence? Although it is a side effect of Tacrolimus, there can be other causes like the
result of heredity, hormonal changes, medical conditions or a normal part of aging. Although more common in men, anyone can lose hair on their head. Have you considered any of these as possible causes? Has there been a recent change in your medication dosage or blood level ?

Hello, I can relate to your issue. It is very frustrating (to say the least). Ive been on Tacro for 11 years & this last year Ive began to see my scalp quite clearly. My hair is baby fine anyway.
I tried Nioxin shampoo and that helped a bit. Biotin made it worse in my experience, although it may be helpful for you. I use the sprinkle on hair fibers & that looks more natural. It definitely is a noted side effect of this drug (all over internet) but there are few other choices that we have. I have purchased a long hair topper now to try out. I am opposed to full on wigs. Does anyone have any other suggestions?

My last labs were 5.9 on the Tac

Thank you so much @bobinnevada 😊 Your BK virus success story makes me very very happy! What is your current Tacrolimis target range....are you 6 to 8 like me? It's wonderful that you are taking such a low dose of Tac now!

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

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!!