New treatment: Prograf / tacrolimus

My DD13 had her first, hopefully worse, flare with IBD colitis recently. I have it too and have been successfully managed WHEN I take my meds, with steroids during flares. My child --- Not so lucky. Steroids - NO. Remicade - didn't work. So our drs, at an unnamed (til further notice) hospital, have tried Prograf (aka tacrolimus) an organ transplant anti-rejection medication. A bit new for IBD, but it worked immediately and profoundly. 3 days ago she was in ICU, serious condition, surgery a sure thing... today,  almost the same child pre-IBD. She's eating (1st time in 2 weeks), she's not pooping blood (1st time in 5 weeks), most tubes and IVs removed. So for all of you who are at the "end" of the meds loop for remission, if your doc didn't mention this to you, mention this to your doc. My gastor-surgeon brother (at a respected specialty clinic) had not heard of this... yours may not have either. Not without risks, but what is??? She'll do azathi. for maintenance.

I had not heard of this particular name brand or generic drug (and can imagine some Dr/GI might not either, but that does seem odd). It is an immunosuppressent, so it is like 6mp. It is sometimes used with Crohns - especially when fistulas develop. Any Dr or GI who had not heard of treating IBD with immunosuppressents has been living under a rock.

From this report, it does seem to work much faster than 6mp, which can take weeks to months to fully kick in. I wonder if that means side-effects can also come on much more suddenly and strongly.

In addition to the usual warnings about increased risk of infection, the cautions for this drug seem to include increased risk of hypertension, and of developing diabetes. Other side effects I saw listed were:

Tacrolimus may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

headache

uncontrollable shaking of a part of the body

diarrhea

constipation

nausea

vomiting

heartburn

stomach pain

loss of appetite

difficulty falling asleep or staying asleep

dizziness

weakness

back or joint pain

burning, numbness, pain, or tingling in the hands or feet

rash

itching


One can always hope for itching instead of uncontrollable shaking.


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I am glad for you daughter's recovery.

That said, what an odd 1st post. The whole "unnamed hospital" and "unnamed specialty clinic" and the convenient brother who is a gastro/GI doc. This drug has been used before for IBD. It says so on the web. SO why the unnamed hospital? It is not like the doctors did anything novel or tried something for the 1st time ever, or have any reason to not want exposure. It is more like you are trying to sensationalize your posting by wrapping it in mystery - making it sound like a tabloid bit. .... and the very casual dismissal of the risks, suggesting everything has risks - well that sounds more like a paid pharmacy rep trying to increase market share for a drug.

Very odd.

Post Edited (DBwithUC) : 7/24/2012 8:10:23 AM (GMT-6)

Sure would have liked to know how your daughter is doing. I was just doing some research on this drug.