I know some of us are having frustration with different treatments, so wanted to share my experiences with tacrolimus.
For context, I was in remission as of December, but had a ton of work stress and then the death of a family member January-March, and I went into a flare. It was mild - flex sig showed only 3 cm of inflammation - and few symptoms. My flare worsened suddenly a week ago - so we decided to try adding topical tacrolimus to my current Remicade regimen. I’m doing suppositories, 1mg each, twice per day for 30 days, after which we’ll reassess.
1. I was starting to pass blood by itself the day before we started treatment. I had the worst tenesmus/spasms I’d ever had, very bad constipation alternating with diarrhea. The next morning, after starting the tacrolimus, the blood was almost completely gone, and the rectal spasms were reduced by probably 80%. This response has continued, and now the tenesmus is completely gone and almost no blood. Alternating constipation/cramping/diarrhea have also resolved. Urgency was gone as of yesterday. Even prednisone never turned things around this quickly for me.
2. Almost zero side effects - and I have side effects from EVERYTHING. The first few days, there was burning after inserting the supp, which would go away within about
ten minutes. Five days in, that’s now almost completely gone. I was also having a little loss of appetite/stomach pain after using them (but mild) - that’s gone now, and my appetite has returned.
3. The medication is not FDA approved for UC, though there have been several small studies showing remission rates upwards of 70%, so my doctor was willing to try it (his suggestion). It is more commonly used in Europe and Asia apparently than it is here. We have it made at a compounding pharmacy which took about
two days, and the cost out of pocket for 60 doses is around $120.
4. This week, I will go to have my tacrolimus levels checked to make sure I’m not absorbing too much of it systemically. If things are going well, they will monitor biweekly or monthly; if levels are high they will follow more closely.
My UC has been stubborn to treat - prednisone did almost no good, Cortifoam didn’t help this second time around, I was intolerant to mesalamines (colazal/Rowasa) and it took monthly Remicade infusions to get me into remission, which lasted only about
four months. It has been amazing to see such a difference, so quickly, with tacrolimus. There is some debate about
whether it should be used long-term, but it does not require tapering and is not a steroid.
I’ll keep this thread updated - up next is to decide whether we stay on the Remicade or use the tacrolimus as a bridge to get me to Entyvio or Xeljanz. Fingers crossed!
F, 40. Diagnosed Feb. 2017 - left-sided UC.
Finally off prednisone as of 5/15! Remicade 5mg/kg every 4 weeks.
Mesalamine intolerant (Rowasa, Colazal)
Remission as of fall 2017; mild flare March 2018
Zoloft; mostly dairy free.
Post Edited (Fletch10) : 5/7/2018 9:48:35 PM (GMT-6)