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Elmiron for almost 2 yrs - flaring now though

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  • Elmiron for almost 2 yrs - flaring now though

    Hi there. I had posted in the flare section but it may not be the most appropriate place.

    I was on Elmiron and the IC diet 2 yrs ago and within 6 weeks there was a marked improvement. Some flares, of short duration but nothing major. Indeed, for the last 4 mos I had NO symptoms at all. None.

    I got cocky. I stopped drinking Evian, had the occasional coffee, chips, you name it. With no problems. For a couple months.

    Then for the last week or so I had some on and off irritation and now am in a full flare. I had some green tea extract and maybe that did it for me.

    Back to the diet I go. I was so stupid.

    My question is: has this happened to anyone else? How long do the flares last now? (heck, they used to last a month). Any words of advice?


  • #2

    drink lots of water!
    if you think you drank enough...have one more glass

    you will be all day.
    but you should feel better tomorrow

    are you taking any meds?
    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

    find me on FACEBOOK -
    search my email [email protected]

    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    PM Elavil 25mg


    • #3
      Thanks. Will drink more now. I am still on Elmiron and take Remeron as well. I was in the middle of weaning myself off Remeron and this happened. I don't know what to attribute the setback to....


      • #4
        hi kmaot, perhaps look carefully into what you ate/drank/any new meds etc you have had in the last week or so

        hopefully if you go on a strict IC diet whilst flaring, that should help you back on track. or try bicarb of soda in water to help alkanise urine/ tums/ pyridium or azo in the meantime for the pain/frequency.

        sometimes it can be a case of a little of bad foods etc are fine, but too many can flare......
        like icndonna, said when you feel better again, add in foods slowly perhaps like one a week......
        IC diagnosis: Aug 2005
        Symptoms: Urgency, urge and irritation and urethral symptoms
        Flareup for 1 year til July 2007 (had constant urge and pain et al....)

        Elmiron 100mg 3x daily April 2006 - present
        Enablex 7.5mg nightly Sep 2007 -present
        Atarax, Elavil 10mg nightly (Dec 2007)
        Acupuncture - November 2007 - present

        (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)


        • #5
          I am doing really well on Elmiron. I have had flares though from time to time. Usually when I went a little crazy with foods. The more have lived with IC though the more I can tell which foods really trigger things. And I am really able to tolerate a lot, and eat most things. I think the Elmiron has really helped with that.

          That being said a flare can be any amount of time really and it can have varying degrees of intensity. I believe that the Elmiron can help you with the length and intensity of the flare. With my experience, my flares have never been back to the level of how I felt when I was first diagnosed with IC, and before I went on the Elmiron.

          I have had a flare last just a few hours to a day or two, to one that lasted a whole month. The one that lasted a whole month was after a horrible time period of three bladder infections in a row. I think my poor bladder was really in bad shape after that and just took a while to heal .

          Just hang in there, it will pass. I think the key is several things:

          ** watch your diet
          ** drink lots of water
          ** don't be afraid to use all your tools etc to help with the pain while you are flaring, heating pad, pain meds etc, while you are flaring, whatever you have used in the past on top of the Elmiron. In other words don't suffer with the pain if you don't have too and something will help you. See your doctor if you need to, if you need extra help with pain. You might want to see your doctor just in case, to check for a bladder infection (if you suspect an infection or have had infections in the past, or you can't tell the difference between IC pain and infection pain)
          ** take extra care of yourself, try to rest a little more
          ** AND try to not panic (I know it's hard) you will get it under control again and it will pass, stay positive

          Good luck !
          Diagnosed with IC in 9/2005,
          Currently doing good, taking breaks from Elmiron, reduced amount.


          • #6
            Are you still on the elmiron?


            • #7
              Also, this is the season for allergies.

              Good luck
              past meds:
              elmiron 100mg 3 x a day
              cystoprotek 6 a day
              elavil 10 mg
              Femcon fe
              non-shellfish vegetarian glucosamine HCL
              750mg once a day