06-12-2011, 05:42 PM #1
- Join Date
- Jan 2010
I recently received a email regarding this product from IC Network,( I think).
It is supposedly a compond of FDA approved ingredients that is used as an instillation for IC. They used the term Off-Label RX to describe it. Since this is a combination of FDA approved drugs & prescribed by a doctor I doubt it would be as expensive as the Elmiron which has no generic for it. The information advised your uro could do these instills in office or you could self treat at home.
Does anyone know anything about this new idea? I suppose it is a replacement for Elmiron.
I am interested.
06-20-2011, 05:38 AM #2
- Join Date
- Oct 2002
There are other posts about this on this forum just maybe under other sections. I tried it and it did not work but maybe for others it does. Good luck. It cost me $600.42 years IC. 2013 tried liposome instillations at California Stem Cell TC and the pain I guess from the catheter was too much. I tried 3 times. I am going to stick with trying a few old medications for now - hyomax and try vaginal valium. I still think herbs are so much safer than drugs.(I took an overview course a few years ago.) But there is so much little research on herbal remedies for this complex disease and people in pain need help as soon as possible, therefore RX drugs are necessary. I myself was trying elmiron (after cystoprotek and aloe vera did not seem to coat the bladder for me) Back to herbs, if you think that your IC is caused by histamines and allergies, etc, there are many researched herbs and herb formulas for that type of thing so perhaps that may be a path for you. But since IC is so complex, those herbs may not help. Perhaps if you think you are getting infections, there may be herbs that could deal with chronic, drug resistance problems but you would need some professional guidence. I believe I keep inflammation down by taking cucurmin extract, and other anti-inflammatory herbs - there are many good ones. You SHOULD find some that agree with you and your medication protocol if possible.
06-20-2011, 12:55 PM #3
As purpleviolet said, it costs around $600. I've seen some people say that their insurance will cover it but mine will not. The way I understand it, you pay the compounding pharmacy and then they send the ingredients to your doctor's office so they can do the instillations. I asked my uro about it and she said that she's heard reports that it's worked for some but she treats a large number of IC patients and she said that in her practice, she's not seen anyone yet that's responded better to it than how they'd do with an Elmiron rescue instillation.Diagnosed with IC in April 2011.
600 mg Elmiron/day, Allegra, 10 mg VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and now self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet
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