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My friend's story....

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  • My friend's story....

    I met a woman with IC last week who had a wonderful story to share. It gives me hope that we can all achieve remission no matter how bad things are. We just have to keep trying to find the treatment that works best for us.

    "I was originally diagnosed in 2002 after several Doctors. Once diagnosed it took 2 urologists before I finally found relief. Both urologist stated I had one of the worst cases they had seen which resulted in my bladder shrinking due to be so hard and rigid. At my worst I contemplated a leave from work as doing anything besides staying in bed became too difficult. The first Urologist wanted to do weekly instillations directly into my bladder. Other doctors I saw tried several different pain blocking medications which resulted in several unpleasant side effects, but no relief. So I got a second opinion and for me some relief did come from diet, exercise and baking soda baths, but it was a medication combination of Elmiron (3x's/day) combined with Hydroxizine at bedtime that brought complete relief within 2wks. The Elmiron did not work without the Hydroxizine which is an antihistamine consistent with the theory that IC may be an immune problem, as I initially tried Elmiron by itself. After 4 yrs I was able to reduce the Elmiron to 1x/day. In 2008 I stopped the Elmiron completely and in 2009 I stopped taking the Hydroxozine. No symptoms at all including my frequency and ability to hold my urine. In 2003 I met another IC sufferer who was about to have a radical surgical procedure to have her bladder removed and after we spoke her doctor put her on the same cocktail of drugs and she had the same results I did."

    Onset of symptoms: June 2010
    Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
    Diagnosis: September 2010
    Current status: Fabulous. I'm feeling 90% of normal.

    Current Treatment

    Gluten-free diet
    TUMS and Prelief with acidic foods
    Alkalinizing drops with acidic drinks
    Elmiron for replenishment of the bladder lining
    Dom-Oxybutynin for bladder spasm

    Past Treatment

    URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

  • #2
    Woo hoo!! Excellent combination of meds. I never took elmiron myself.. but had very good success with the hydroxyzine!!! Hope reigns!
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.


    • #3
      Thanks for sharing we all need hope.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily


      • #4
        That's good stuff! I recently went down to 2 Elmrion's a day due to the shortage and have had no problems at all so far (it's been a couple weeks). So maybe 2 is all I need! I also went down to 50mg of Imipramine a day as well.
        Your Friend,

        Diagnosed: 10/16/09

        Elmiron, 100mg 2x per day
        Imipramine, 10 mg per day
        Diazepam 10 mg for sleep
        Zovia, birth control (ongoing-no periods)
        Hydrocodone, 2 pills a day (at any time of day)