URACYST will not come to the US

[Cadyfatcat]

Uracyst, a chondroitin sulfate solution used as a bladder instill, will not come to the United States. I get it from canada, use it, and it has helped me immensely. It has to be used in combination with the IC diet. I have been able to go off all other medication and I feel better then I ever have. The phase II trail study was badly designed, alas, I could have designed it better. You can read about it here:


http://www.marketwatch.com/story/watson-announces-top-line-uracystr-us-pilot-study-results-2010-11-10?reflink=MW_news_stmp

[Snowden1]

Oh, you have got to be kidding me. It didn't hurt anyone and has been in Canada forever. So many people have had good luck on this (just on this site). I was in the study and don't know if I got the placebo or other (still). I did try the Uracyst and it did not work for me, but that doesn't mean that it can't work for others. I feel that if it is safe - let it come to the U.S. This is ridiculous. Now anyone that it is working for has to get it from Canada.:cussing: Why can't things be more simple. I thought the phase 2 testing was more for safety then whether it was effective. It was my impression that it would be coming because it was already proven to be effective in other countries.

[snowgirl]

yes my friend drug rep in CA just sent me news release on it as of yesterday
I posted it under instills press release
I am saddend= how are those on SSD suppose to afford uracyst ?
U will still be able to get it from Canada it just wont be approved here in USA and covered by insurance.
I dont get it everyone here seems to be doing so well on it.

[Cadyfatcat]

Well that is not exactly true. A lot of people on this board have not had any results. But it seems like the people who do get results improve greatly.

The problem is probably that IC is not caused by one thing. It is diagnosed mostly by symptoms. Therefor a single medication cannot work for everyone. Cystistat had the same problem passing through the FDA. It seems like the FDA doesn't really understand the nature of the disease itself and its variable etiology. This is a problem, since it seems that any drug made for treatment of IC will be doomed to the same failure when facing regulatory scrutiny.

[bjwright]

BOO HISS to the FDA on this one! Alex is correct; some patients do not respond to Uracyst.

I am one of the fortunate people who do respond very well to Uracyst. I was previously on Elmiron 300 mg. X2/day. I am NOT advocating that anyone go off Elmiron w/o conferring w/your physician. I just tried lowering the dose to 200 mg. in the AM, did so b/c of the ridiculous co-pay I have for Elmiron and have been successful. I'm also very fortunate that I don't have to limit my diet much at all. I am in PT and Rx'd Val 5/Flexaril 10mg/Lidocaine 66.5% vag suppos for PFD. I'm beginning to think for me PFD was the "chicken."

Alex, thanks for letting us know that you've been able to wean off Elmiron. I think I'm in that group as well. Tomorrow I'm going to lower the dose to 100 mg.

Be well everyone. J

[jvr]

Hi,

Cadyfatcat, in your opinion, how were the trials poorly designed? Stellar said that they will be looking for another company to pick up where Watson left off...crossing my fingers.

Jill