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elmiron shortage/tappering down dose

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  • 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.

  • #2
    Thank you for sharing your success story. It gives all of us hope.

    Stay safe

    Elmiron Eye Disease Information Center -
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      It's so nice to hear when someone is doing well. Good luck on keeping a happy bladder.