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Will I need to take elmiron for the rest of my life?

8 Answers

Ahodges 23 Jan 2021

I have been on Elmiron for over 15 years. I stopped taking it 1 week ago after reading about the lawsuit against Elmiron. Several people commenting on the lawsuit has had success with a Desert Harvest product. I have been taking it for one week and no pain thus far. I suggest researching it and see if it is something you would want to try.

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Inactive 17 March 2012

no one can say yes or know except you but i can tell you being ayoung patient i wondered that constantly and well i like healthy so i tried the whole organic plant based diet aka organic vegan and honestly i used to have surgery every 6 months and now i take half the elmiron and darpaz i used to and no surgery now for almost 3 years. I knew how well it worked when i went on a family cruise and did not have organic food my bladder started flarring and when i got back to my own food it improved again and my doctor did mention a patient that was able to stop elmiron due to that diet. it's something to consider trying it's really actually not bad promise!! (not having a bladder is worse eh? ) ;) good luck

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Inactive 21 Nov 2011

Hey I see you were directed to your doc bit it takes forever to do so in my experience so honestly I was diagnosed at 18 now 22 was told I would have to take it my whole life I did happily for the pain relief however problems later.I decided to try the organic whole foods plant based.diet tailored to my bladder sensitivities the diet has allowed less elmiron. I only began after seeing other patients successfully get off the elmiron and one even in remission. Fatigue etc improve greatly also if your worry is so I am with ya on that and this has seen best results. Take care and I hope I helped:)

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vtech10 5 April 2011

Susanne66 go on the interstitial website contact them and ask your questions, they have advocates who have ic like you and I and they can be more informative with answers you need and other treatments that are new, most of the advocates have interstitial cystitis and you guys can share treatment methods and others concerns vtech10

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vtech10 26 March 2011

hi bluestar try talking to your doctor about bladder injections maybe it will work for you or they create pain cocktails to help with your pain vtech10

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bluestar582000 3 March 2011

I also have IC the doctor said I need it forever. I was just wondering if it is safe to take for a long time. Thanks for your responses.

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Ruth P 5 Jan 2019

I have used Elmiron for 15 years and have had no flare ups. I have urgent diarrhoea and have to eat very bland boring food! I’m now going to try to give it up gradually as apart from side effects it’s soo expensive!

lyndajd 3 March 2011

As the previous answer suggests it will depend on what your consultant has diagnosed - I have confirmed IC and I expect to be on this drug until perhaps something better comes along or miracles be known - they find a cure!

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suzanne66 2 March 2011

You should direct this question to your doctor or specialist.
Without your patient history, diagnosis, health etc it is impossible to give you an answer. Sorry not to be of more help.

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