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elmiron shortage/tappering down dose

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  • earthlady
    replied
    It's so nice to hear when someone is doing well. Good luck on keeping a happy bladder.

    Leave a comment:


  • ICNDonna
    replied
    Thank you for sharing your success story. It gives all of us hope.


    Donna

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  • nevergiveup
    started a topic elmiron shortage/tappering down dose

    elmiron shortage/tappering down dose

    Hello my fellow ic'ers I just wanted to share some of my miracle success story. I can now say that the elmiron shortage was kinda of a miracle for me in disguise. I was taking 3 caps a day from nov 2009 to may 2010. Them may 2010 to sept 2010 4 caps a day but went back to 3 caps a day due to major hair loss and some what improved symptoms and better food tolerance. So from sept 2010 to april 2011 I went back to 3 caps a day. The catch was that I kept on with 2 in the morning and one at nite. I found that by doubling the caps in am dose my bladder was alot happier thru the day and monthts. I found less flares and I was even able to tolerate DECAF coffee with creamer which was a huge accomplishment ! So trucking along all this time on 3 caps a day I had minimal flares sleeping better at nite with the help of only having to take half an 25mg atarax at nite (a whole one i was very drowsy in the morning). Now getting to the recent shortage. I was really stressing becuz my pharmacy only had a small amount to refill my elmiron. I managed to get advanced prescription from my uro and got more caps to get me thru the next months so I also took it upon myself and I first tried 2 caps in am and one cap in pm one day then two days 2 caps a day with extreme focus on my food I eat. Well AFTER about a week of doing this I was ok but I noticed the food tolerance wasnt that great. So I the went to 2caps in am one cap in pm then one day only 2 caps in am none in pm then next day back to 3 cap a day alternating and on and on...AND GUESS WHAT I did it I have been good like this this I have developed a menu kinda system for food everyday I can eat along with this deccrease in elmiron . I look at it like maybe next year I can then go to only 2caps everyday with diet. My other big accomplishment is that I am RUNNING again. I am starting to feel normal again somewhat. I ameven wearing jean shorts again, planning to travel without worrying too much about bathrooms all the time. It has been a long road of trial and errors but I just wantd to be a ray of hope for you guys that Ic can be overcome. I have to say determination and working around detours is important in getting better. Discipline is major as well. I havent had a soda, chocolate, spagetti, grapes, strawberries etc in 2 years. Every summer is hell for me looking at all that fresh produce at the grocery store. BUT good news this summer I was able to buy WATERMELONS and eat as much as I wanted I wasnt miraculosly running to the bathroom with that inflammed, pressure bladder feeling. If anyone has questions on my experience with elmiron plz ask me I will gladly pass on myfindings. I keep a food jourmnal (very important) due to my food allergy to wheat which I am now thinking caused my ic symptoms. I had breathing problems and red hot face (thought it was roscacea) turned out once I cut out cakes, cookies, breads, breaded items my breathing improved, face cleared up and now my bladder feels like it is now healing) I have to say one last thing I am CHRISTIAN and gave my life to God and I owe him all the credit for my progress. He has truly given me all the tools and the determination to heal my bladder and thru fasting, diet change, disciplinary exercising I can finally say I am getting better. Thank you lord!!
    Last edited by nevergiveup; 07-15-2011, 12:54 AM.
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