Hi @kuro. Just to ease your mind, (Protopic) Tacrolimus is an anti-inflammatory drug used with transplant patients as an anti-rejection medication. It’s been approved by the FDA since 1994. So it’s not new and definitely tried & tested.
Most of us transplant patients, either solid organ or stem cell are on larger doses in capsule form of this medication…solid organ patients take it for the rest of their lives.

As a result of my bone marrow transplant I have what’s called chronic graft vs host disease, where my new immune system (from a donor) finds areas in my body to attack because it sees me as the invader. My issues are on my tongue.

I use the exact same tacrolimus ointment which you’ve been prescribed and have to apply it to my tongue several times daily. I’d spoken with my transplant doctor about taking it orally because it specifically states on the box not to take internally. There are a number of meds used multipurpose and off-label. This is one of them.

What I learned is that the amount of medication in the ointment isn’t at all what’s considered a therapeutic dose of tacrolimus (prograf). Minuscule compare to what is consumed in capsule form. What’s absorbed is local and not going to cause issues systemically making it ok to use long term. It calms the inflammation and eventually may help improve your condition. The end result is to correct your dermatology issues and sometimes the end justifies the means. ☺️ I was told there no time limitation for use as I may need this indefinitely.

Dermatologists recommend tacrolimus ointment routinely for patients with eczema and other skin issues. You saw improvement while using the ointment, I’d encourage you to keep up with the treatment in hopes of getting this corrected. What do you think?