Can you tell me where you are getting this drug?

It’s a study at cedar Sinai. You have to go through hoops to get into it. 

Ok I'm desperate to find this drug study --I live in Houston nothing near me unfortunately -managing using Rectiv ( (nitroglycerin) for the pain

Another thing-- and this may just be a coincidence but the tamiflu stopped my pouchitis symptoms within 24 hours. As soon as I stopped the tamiflu it came back. I'm curious if you have tested positive for the flu while on the drug? 

Oh that's interesting! I got the flu this year and it was a BAD one. It took 2 days to even find a pharmacy that had tamiflu.  I had already been doing well on the alicaforsen so i couldn't tell. 

There's no big research hospital near you in Houston? They might have a study. They did say that the study was going well and they're trying to accelerate getting it to market so it might only be a couple of years. But who knows, right? Good luck and sorry about the pouchitis!

I'm in Vancouver and I have just screened in to the trial. Haven't even started treatment yet and don't know if I'll get drug or placebo. But I'm not taking any antibiotics right now and going 12+ times per day. Fingers crossed!

Fingers crossed! I've had the open label for 3 rounds now and it does seem to help. I hear that they're fasttracking this drug so that it can come to market within a couple of years.

Hi - I have my pouch since 1998 following 30 years of UC. I have had 3 treatments with Alicaforsen. Twice in a named patient programme and once in a clinical trial at University College Hospital London. The improvement in my overall health and pouch function, especially after the 3rd treatment has been dramatic. Now a year on I think things are beginning to flare up again but a years worth of not constantly being in pain or needing the toilet has been amazing and I have been told that I can have more Alicaforsen if I need it. My general health also improved and I have had fewer colds and no flu! 

Although the nightly enemas are disruptive the benefits for me have been totally worth it. 

It is really great to hear that so many J-pouchers are having good results with this treatment. I just had my scope earlier this week and will find out tomorrow whether I have screened in, with treatment to start Monday. I am optimistic! I never wanted to be antibiotic dependent, but that is what has happened.

Turns out, the trial is winding down, and if I am admitted I will be among the final cohort. Hopefully, the trial will show that there is enough benefit (and not enough drawback) for this to go to market soon. And I hope I don't get placebo and I hope it works for me as it has for so many others!

That sounds great! I'm glad it's working for you for so long. For me the cycle seems to be that I take the enemas for 6 weeks (while i'm on lower dose budesonide and an antibiotic) and it gets all better in 2-3 weeks (though you can see the results in 3 days even.) It generally lasts for another month and then symptoms start creeping back in. So it's a 10 week cycle but if i can get down off of my other meds it should be worth it. I do have a lot of head colds and flu with it but it could also be because i have a one year old in the house and less sleep.

Update: I've been doing the enemas nightly for almost 2 weeks. I haven't really noticed any change. Well, I shouldn't say that--I've had okay days. Still haven't gotten my bathroom trips below 9 per day, and still averaging about 11. I'm reading here that some people don't feel the effect for 3 weeks, so I'll stick with it and try to stay optimistic. Right now my biggest fear is that I'm getting the drug and not responding. Never thought I'd hope to be in the placebo group! It will be months before I can go open label. Onward.

I'm sure I sound like an annoying patient BUT

dors anyone know when this drug will be available to everyone???

It sounds like they want to try and rush it to market, as someone said earlier in this thread. I believe I was one of the last people (in Canada anyway) to be admitted to the study, so it seems like the clinical trial period is winding down. I don't know how long it typically takes for a product to come to market once it has cleared the trial phase, but I would suspect it will still be many months, possibly a couple of years, before it is widely available. I am supposed to be in the double-blind study for 6 months before I have the option to go open label.

Hope this helps.

Hi ! I was wondering if anyone had any updated information on Alicaforcen - those in the trials - are you still on it? would love to hear any recent news/info.