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Holy elmiron instill burning!!!!

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  • Holy elmiron instill burning!!!!

    So on about week 6 of twice weekly instills without much luck. They actually make me flare worse for about 24 hrs. We decided to switch to elmiron instills to see if it helped. The first one made my urethra burn so bad!!!!! Something that I didn't feel at all with the heprin! So we went back to the heprin for a couple and then tried the elmiron again. Little less burning but still really bad!!!!!! My bladder feels the same, no better no worse, but the urethra burning is enough to make my eyes water!!!!! Any thoughts? Or experiences? Think it will get better if I wait it out?
    Current: -pelvic floor therapy, -weekly uracyst instills

  • #2
    Re: Holy elmiron instill burning!!!!

    You might want to instill lidocaine or Marcaine FIRST, making sure to get some on the urethra, to see if that helps.

    Stay safe

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    • #3
      Re: Holy elmiron instill burning!!!!

      I agree about the lidocaine. I get that mixed with my heparin in my instills. Some also have sodium bicarb mixed in as well.

      I hope that helps!
      My blog on IC, adoption, and academia: the garlic whisperer

      Diagnosed Jan 2013. Currently taking:

      200mg Elmiron morning and night
      25mg Elavil at night (no drowsiness or weight gain)
      culturelle in the morning
      SLIT drops for allergies (environmental) 3 drops/night under the tongue
      zyrtec 24 hour nightly (recommended by uro)
      Instillations 3x/week: Parson's Solution
      uribel and prelief as needed

      Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
      No longer need them, so I only take them during flares.


      • #4
        Re: Holy elmiron instill burning!!!!

        I have only had a few elmiron instills, and they did not hurt at all. As a matter of fact, the reason I stopped them was because the nurse practitioner who prescribed them told me "If they are going to help they will start helping right away, within 2 or 3 instills."