Hi! While it’s interesting to see what everyone’s dosage is for Tacrolimus, (Prograf) keep in mind each person’s requirement is different. What the appropriate level is for one person is not necessarily the optimal amount for another. Too low and there’s a huge risk of rejection of the organ. The body’s immune system views the organ as an invasive/foreign object and its goal is to attack and defend! That’s what our immune systems do. So it’s crucial to keep the tacro at a level that is right for each person’s unique biological construct.

That’s true also with stem cell transplants, where tacrolimus, the anti-rejection/immunosuppressive drug, is used to help avoid Graft vs Host disease until the new immune system learns to recognize the foreign proteins in the recipients body. My dosage was different than four of my cohorts who kept in touch during our recovery periods and into our post transplant life. One person, is 3 years post transplant and still taking Tacro at a fairly higher dosage of 2 mg daily. Anytime she tries to taper, her GVHD flairs as the new immune system still sees her body as a threat. Most stem cell patients can taper off starting around 6 months, I was on it for 2.5 years to avoid GVHD at a very low dose of .5mg daily. But if I remember correctly, I was on 6mg daily initially for a few weeks.

With solid organ transplants it’s my understanding that, over time, you’ll be weaned to the lowest amount required to be able to avoid rejection of the organ. There are a few people who have been able to halt the meds altogether if they have a match that’s very close to their own. But this is done under very close guidance with the transplant team and can take years to happen.

There are clinical trials being held with some breakthrough technology that may allow people with certain transplants to eventually wean off the immunosuppressives altogether! That would be amazing for the millions of organ recipients.

Congratulations on your 2 year anniversary! Are you having any side effects from the Tacro?