Went to NYU LANGONE for a second opinion 3 weeks ago meet with DR DAVID HUDESMAN found out there was a blind study just starting for ALICAFORSEN  just started with meds or placebo .Study had good results in Europe and just started in the states.NYU is approved for 10 to 15 subjects and about 170 total subjects in the states .His # is 212-263-3095 his nurse is Amy i'm sure if you  have any questions about the study they can help you. Have had chronic pouchitis for 4 years not crazy about chiemo  based drugs like 6 mp and thought this was worth a try.Only day 2 hoping it works.  

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I'm hoping to start this trial in the UK. I've been off antibiotics for 2 weeks and these last few days the pouchitis is back with a vengeance so I'm hoping this will work.

Will keep you posted.


Being off the antibiotics was bad but i'm in day 5 of med or placebo  and things are somewhat calm too soon to tell if it's real     good luck 

I am in day 15 I am definitely having a good reaction to the med or placebo my guess is med definitely feeling better . I  go back to NYU thursday.  

What is this? I'm on Entyvio for pouchitis. I kidda envious even though Entyvio is doing its thing. Good to know if this fails there will be something else.  

Dr Bosworth is very big on research and new studies. He will be missed at Cornell

Last edited by AllyKat

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