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

@shepn7, I requested that your question be moved to this existing discussion where you can connect with other transplant recipients with hair loss after their transplants. My hair was thinning after my transplant in 2009, and at that time I didn't realize that other recipients experienced the same thing. I honestly thought that maybe I had inherited my dad's baldness gene!
On your profile, I see that you transplanted in 2017, so I imagine that this new shedding event is quite troubling, I know it would be for me. I want to introduce you to some members who have participated in this discussion. And I invite you to join in the conversation.
@hello1234, @alive, @stephanierp, @mollyv, @jennifer0726, @jackiez, @scottij, @leahdrose, and @karen51 - How long ago was your transplant? Has your hair regained its natural thickness? What have you learned that you would like to share with @shepn7 ?

My Doctor increased my tacrolimus a little while ago, and I've noticed I've been losing a lot more hair than usual. A disturbing amount.

I know this is a side effect that comes with this drug, but is there any way to combat this that anyone has found?

I had a Doctor suggest the vitamin biotin(I think thats what its called). I haven't tried it yet, but I'm going to pick some up today.

Anyone have suggestions or things that have worked for them?

I didn't lose any hair on my head. The hair that disappeared and never came back was my leg hair and under arm hair.....haha. Don't miss them!

@stephanierp
Wow, how wonderful! That is a fabulous low dose regimen each day...terrific news! Is there a way the docs can tell how close the match is?
Also, totally unrelated question....but since your transplant was around the same time I am curious. How often are you getting protocol kidney biopsies? I had one at 4 months and another one at one year. Are you having one at your two year annual visit?

Yes, you and I are probably among the few that hold 2020 in such high regard:)
Yes, there are blood tests to measure the Cyclosporine levels. My levels are tested regularly. My donor kidney was a close match and my body is sensitive to meds, so I am on some pretty low doses of meds, as I understand it. I take 180 mg Mycophenolate 2x a day and 100mg Cyclosporine 2x a day.

@stephanierp That is awesome...Congrats on your new kidney!
My kidney transplant was July 2020. The year of 2020 is very special for both of us!! 😊
I currently take 500mg Cellcept (MMF) twice a day and 6mg long acting Envarsus XR once a day. I take regular blood tests to monitor my Tacronlimis level. Is there an equivalent blood test to monitor your Cyclosporine? What dosages of MMF and Cyclosporine are you taking?

I had a kidney transplant in February 2020. I take Cyclosporine with Mycophenolic acid, which I believe is a form of Cellcept, or vice versa.

@stephanierp Thank you so much for letting me know that you successfully changed from Tac to Cyclosporine and your hair returned (along with the resolution of other side effects). That's wonderful news! Are you liver or kidney transplant? Also, do you also take Cellcept (MMF) with your Cyclosporine for your immune suppression cocktail?

Hi,
I did end up switching from Tacrolimus to Cyclosporine (modified) in September, due to a bout with pancreatitis. I had been dealing with significant hair loss, while on Tac. Since I switched, my hair has come back to its normal thickness. My body did not seem to react well to Tac on many levels. I just never felt very good, while I was on it. I feel much better overall on Cyclosporine, and have not had any pancreatitis since the switch.

I would talk to my doctor and communicate your concerns. I think it is important to feel your best, while managing post-transplant issues. Be honest about your concerns, and talk through what options you have, and what medical concerns are connected to each medication.

@alive Thank you so much for sharing your experience with hair loss and your positive experience with sirolimus. As a kidney transplant patient I am nervous about the idea of making any changes to my anti-rejection meds, but it is probably the tacronlimis that is making the bald spots. My understanding is if it bothers me enough, the doctors can switch the Tac to Sirolimus. It's hard to know what to do. I don't know if it's worth trying a medication change or just buy a wig.
It's hard to know what's the right decision. Thank you so much for jumping in to help me! 😊