Does ELMIRON really works???

I have been diagnosed with IC for about 2 years now. I have taking Elmiron and Reactine everyday since. I had the Hydro Distention 2x and it doesn't seem to get better. I would like to know if any of you out there with IC are surviving without ELMIRON. It's a very expensive medication and Im not really certain it's helping me at all!

Any comment on this, please!

[Raven17]

It may not work for you, but my urologist told be to take benedryl.  She said that somehow the antihistimine helped reduce the spasms (and hence the pain).  I didn't like the possible side effects of the other choices so I tried it.  Now whenever I feel the spasms starting, I take benedryl at night for a few days.  It works for me. maybe ask your doctor about it.  Another observation I had was when I drank several carbonated/caffinated drinks, the symptoms worsened dramactically.  I stopped drinking sodas, except for one a week and cut out all caffine, except for that first very necessary cup of coffee in the morning and my symptoms have reduced a lot over the years.  There may or may not be a link, but I'm not willing to chance it just for a soft drink...  good luck.

[ellie522]

I have taken elmiron since I was diagnosed in 2004- I took 100mg 3x a day .
You are supposed to take Elimron 1 hr  before you eat or 2 hrs after you eat. the first and last dose is OK to follow that rule, but the middle dose is hard to find that time when you haven't eaten within 2 hrs.  I went to a new IC provider and she changed the dosing to 200mg 2x a day.  So I take it when I first get up - and wait 1 hr before I eat breakfast, and then I take it at night before I go to bed, on an empty stomach.  
The other med I take is Attarax (or Hydroxyzine) an antihistamine- I take that at night.
Be sure to look at your diet as well- I find I cant have any caffeine (coffee, tea, soda), chocolate, tomatoes, oranges.  And I really stay away from those things that cause me pain, frequency.   I can have camomile  and mint tea and I have found some other things. I have experimented with trying just one new thing at a time and then I can tell if I can have it in my diet.