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Is this working...need input!

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  • Is this working...need input!

    I've been taking Elmiron for almost 5 months. I recently experienced the best ten days since symptom onset (Jul '06). I was so thrilled...thinking....woo hoo it is finally working. Then I decided to be brave (or stupid) and put 4 tiny drops of ketchup on my hamburger....and BAM...pain and frequency returned. It calmed down by the next day but not to the point where I had been. I am also a few days away from starting my period (which always makes me flare) and I had sex last night. Today is not too great! I guess I'm feeling discouraged because I was hoping that once Elmiron started working and I felt better...I 'd continue to feel better. For those that Elmiron truly worked this have some good days and then some bad days before truly feeling great most of the time? I feel like if I reach the 6 month point, and I'm not asymptomatic, Elmiron will be a lost cause. I'm beginning to panic!!!!!


  • #2
    That is absolutely how it happened for me. I would go longer and longer between flares and then the flares themselves would be less intense and didn't last as long. But, each time I flared I panicked b/c I was sure it meant the good days were over.

    If you're anything like I was, the good times will stretch further and further and further. I think it's a very good sign that you felt so good for those ten days - try to hang on to that hope.

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


    • #3
      HI! My IC Uro said it can take a year for Elmiron to work fully......and even then we have to be careful not to return to where we were. Once you stop Elmiron you go back to the 'bad ol'days'. So just be careful what you eat.....ketchup has ssooo many bad things in it for IC'ers. is a sure fire flare for me......sad to say.
      I wish you luck......hope things get better for you! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo: