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constance

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Posts: 20
Reply with quote  #1 
Interested in any new info about instillations.  Can they every help on a permanent basis or is it true they are just "papering over the cracks"? Any feedback will be helpful.

Thanks
sueworld2003

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Posts: 1,166
Reply with quote  #2 
It depends on what you have instilled. Some instils can do more harm then good imo, like DMSO which the Americans used to favor and hurts like hell apparently. There's cystistat over here but for some It just doesn't work, and some health authorities (like my own) refused it because of the cost. But for others It can help a fair bit although I've yet to see any proof It helps beyond a few years at best sadly.
Twiglet21

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Posts: 35
Reply with quote  #3 
Some people are lucky enough to have remission from IC but the rest of us just have to find out what works best to reduce he symptoms/ pain.   I've had Cystistat for over 2 years and it works really well though the nurse who gives me it says the NHS is moving over to Uracyst because its' cheaper by about £10 per dose.   Cystistat/ Uracyst give temporary relief only and are just papering over the cracks so instillations need to be repeated on a regular basis.   
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