Hi @childoffathergod 😊
I think @loribmt may have some experience with a bone marrow transplant and your stopping immune suppression question above.

Good morning, @childoffathergod and welcome to Mayo Clinic Connect. You’ve come to the right place to get some answers for your questions about your stem cell transplant first hand from people who have walked the walk. Though your transplant team is the go-to source for solid answers, it can really feel encouraging hearing the experiences of people who have been there and can tell you first hand.

There are several members in our forum, along with myself, who have successfully had stem cell transplants and will be more than happy to jump in to help you.

Here is a link to a discussion group with Bone marrow transplant members you might find helpful.

My Bone Marrow Transplant story, will you share yours:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I’m almost 3.5 years post transplant and know how frightening it is to start weaning off the medications after transplant. They were our lifelines for most of our transplant journey. The tacrolimus being the most important as it prevented the rejection of the transplant and also prevented Graft Vs Host disease, which can be a very serious complication.

Briefly, our new cells, which take over our immune system, have a tendency not to like our bodies right after transplant. They’re very aggressive and think of our body, their host, as an invader and try to ‘take us out’. That’s where the tacrolimus comes in to keep the new immune system suppressed so that both the cells and our bodies can get along.

Luckily for us, at some point, the cells begin adapting to our proteins and the two can start living in peace together. You have reached this point where your doctor feels comfortable in tapering again as they’ve seen no evidence of GVHD. I remember being pretty apprehensive when I got to .5mg every other day. Eventually it went down to .5mg every 3rd day. Scary but uneventful, though I did have a hiccup with gvhd and had to stay on tacro a little longer and try again. That’s ok too! We all have our own journeys.

What you will need to do, is let your team know if you notice ANYTHING unusual or new. Skin rash, intestinal issues, joint pain, etc. It can come on gradually so keep track of anything new and if it worsens, let your team know. Sometimes it takes a little more time for the body and immune system to work in harmony.

The plus side, getting off the tacro will allow you to drop several of the other meds. You’ll also be able to have your childhood/adolescent and adult vaccinations. Your new immune system will start to mature and eventually you’ll be off all or most of the meds and feeling pretty liberated.

It’s also ok that’s there’s not another bone marrow biopsy ordered right now. Your new immune system is up and running and should be protecting you. Your last several BXs were clean. Future blood tests will monitor your blood counts and if there is anything unusual it can be dealt with. It’s not to say you won’t every have another BX. But for now your doctor feels comfortable without one.

There is no need to fear this transition but I certainly understand what you’re feeling. I’ve been there! If feels like you’re tiptoeing on thin ice for a while. ☺️

If you don’t mind my asking, what led you to needing a transplant and how long ago was it?