Hi all, I was in the trial for Alicaforsen and got the placebo. Then i was able to go into the open label.  They give you the drug as enema suppositories for 6 weeks.  Within 3 weeks it works pretty well and my symptoms are under control. Saying that, i also take cipro and budesonide, 2 drugs i was trying to get off of.  It works well for about month after getting of the alicaforsen but then sympstoms start coming back. So i've done this 3 more times.  The only issue i'm having is that i've had more colds and flu than I've ever had so i'm wondering if it lowers the immune system drastically.  I'm deciding whether to continue to repeat this process or not.

 

Anyone able to get into the open label and are experiencing the same issues?

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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!

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.

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.

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