06-12-2011, 04:42 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, 04:38 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.I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.
06-20-2011, 11:55 AM #3
- Join Date
- Apr 2011
- Phoenix, AZ
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. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.
Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths
Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek
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