I lost my hair when I was treated for leukemia. I went through stem cell transplant. That was six years ago and my hair is very thin and patchy. I’m on sirolimus and have been on it off and on for over three years. No change as far as my hair goes. I tolerate sirolimus well and don’t have side effects. My dose had to be adjusted in the beginning. For my hair situation, I decided to wear wigs. They work well for me.

@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! 😊

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.

@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?