My Miracle Drug: Prograf (Tacrolimus)

I am so so happy I found this site! I can't believe it took me so long. I've already appreciated a number of comments and can relate to quite a few stories.

One thing I noticed in reading everyone's drug regimen is that nobody is taking Prograf (Tacrolimus). It has truly been my miracle drug! After becoming steroid dependent during my second course of prednisone, I must have tried 5 times to taper, never getting under 10mg/day. I finally tapered off SUPER slowly--I can't tell you how it tested my patience given the side effects we all know and love. Had a baseline colonoscopy with my newer GI doc (still wasn't 100%--mostly had disease of the transverse colon--weird I know), and 3 weeks later started flaring again.

My doc uses Prograf as a last option before Remicade. It's an oral capsule rather than an injectable. It's an immune suppressant, so I get blood levels taken regularly, and I'm using it "off-label." It's "label" usage is as a drug for whole organ transplant patients.

I've literally been able to add in almost everything I cut out of my diet for the last 3 years! Including some dairy!

Does anyone else have experience with this drug?? My former GI doc had never heard of it before.

Looking forward to hearing from you,
Rachel

I think there are a couple of others who used Prograf on this site.... I use Cyclosporine which is the sister/cousin drug of Prograf. It works very well for me too. Isn't it scary that there are GIs out there that don't know all of the meds that are available to us. It's good that you found a more informed GI.

--Keith

Hi,

Tacrolimus is on the list of things for me to try if things continue as they are.  It is similar to cyclosporin but in oral form.  There have been a number of studies on it but quite recent.  It is regularly used to prevent transplant rejection. The main problems,  and the reason it is not that popular yet,  in treating young people are that it can cause kidney failure - it can cause an (initially) reversible increase in the serum creatinine in approximately 30% of people and also an increase in blood pressure.  My gastroenterologist tells me that as ulcerative colitis is "curable" through surgery many are reluctant to prescribe it as the worst thing would be to end up needing a colectomy as well as a renal transplant.  However,  it can be very effective in resistant cases - one study followed people up for up to around 6 years and many did well atlhough some obviously did come to colectomy.

It can work very quickly I believe.  I'd be interested to know what you have tried in the past and how long it took to work and also how long you have been on it.  I don't intend to scare you with the side-effects - my gastroenterologist said that if I went on it and he detected even a slight increase in creatinine he would stop it for good as it should be reversible at that point.

Hope you continue to do well on it

Jack99,

Cyclosporine is available in an Oral form but results are better if you start on an IV. Right now I am on Oral Cyclosporine, I will probably be on it for the next couple of months. It is only a treatment med, not a maintanence drug.... you should be on an other drug such as 6-mp or immuran to keep you in remission.

--Keith

I'm glad Prograf worked for you.  I did nothing for me.  I got terrible hand spasms, which my GI warned me were a sign of something serious going on.  I stayed on it for a few months but have since gone back to azathioprine.  I agree, very few people seem to be on it, or even know it exists.