I'm in it but I think i got the placebo.  Had to get off everything but a minimum of 6mg budesonide and it made me sicker than i've been in a decade. Wasn't even supposed to take Calmoseptine and going 20+ times a day.  Trial is up and I should be able to take the open label alicaforsen next month if in fact I did get the placebo. Stay tuned.

Oh no.... sorry to hear things got worse.  I am off the clinical trial drug, whether it was the real drug or placebo remains a mystery still.  I felt no change on the drug symptom wise.  The pouchoscopy before the start of the enemas showed ulcers with inflammation around them.  When they scoped after the course of treatment the inflammation went away but the ulcers still remained.  So my doctor isn't sure what I got , usually they can take a good guess with seeing before and after... anyway if I can remain how I am now and last until the end of the trial we'll find out.  I hope you find some relief soon and please keep me posted.  It will be interesting to see that if you got the placebo what it will be like for you when you should start the real meds... please keep me posted!

I'm approved for open label alicaforsen and will pick them up thursday!  Currently i'm on cipro, flagyll and budesonide.  Hoping to get off all 3 at least for a period of time.  Will check in later.

D

Hi all, as an update, I started taking the alicaforsen open label 2 weeks ago and it's going well! No side effects and things are working as good as can be expected! I'm going to stop taking my metronidazole today and see if i can maintain this regularity.  I'll still be on 9mg budesonide daily but that's it. 

I was in the trial but noticed no difference. Later this week I start alicaforsen open label.  Just finishing Entyvio infusions which did nothing for me but cause fatigue and occasional sharp pain in my extremities.  I swore off Cipro a year ago because of nerve damage, which is too bad because it certainly alleviated the pouchitis.

Following.  I had never heard of this drug.  Is this an oral med or used as an enema for this trial?  Any new treatments, I would love to hear about!

Alicaforsen is administered as an enema. A global trial is underway.  My participation is through a hospital in Toronto. If you Google the drug you will get more information.