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If you had been in remission(or close) and had a flare....

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  • If you had been in remission(or close) and had a flare....

    did you get back into remission? How long did it take? How bad was the flare?

    I'm asking b/c I say I was in about 90% remission(this is what I call it I did have some flares) for almost 2 years. Now out of the blue I went into a flare and it is still going 30 days later, I have been to my doctor who is trying some meds to see how they work. I'm just afraid that I will never go back into the way I was feeling b/c I never stopped my meds. I guess I'm looking for stories that will give me hope.
    Mom to:
    Ella~born 10/14/03
    Travis~born 5/8/06

    Meds:
    Elmiron~2pills 2X a day
    Elavil~50mg at bedtime
    Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.

  • #2
    I know the fear and anxiety that come along with IC flares.

    I've had IC for nearly four years. Except for a lot of the first year, much of that time I have been in remission and haven't really had to take meds. I do get flares...usually they only lasted a week or two and my meds can get me back out of them. Some have lasted longer. So far, and I say this while knocking on wood and throwing salt over my shoulder, I've always been able to get back into remission.

    That said, I started flaring during the holidays (from tons of stress) and while I've gotten myself to the point that I'm comfortable much of the time, I'm not back in remission. I have to watch what I eat and drink and take meds. I'm guessing that this one will take some time and I've even scheduled an appointment with my local uro (he'll be a new one for me as my old one left) to talk about starting elmiron. We'll see. I've not used it before now because I was concerned about the side affects and because I haven't really needed it. But, now it might be time.
    mom_in_ma

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    • #3
      What exactly is remission to you? I'm pretty sure I'm in remission now, I haven't had any pain for about 2mos. and I've been eating pretty much what I want. I do take calcium tums with the foods that really made me flare bad, and I'm still on my meds, cutting back to 2 pills a day on the Elmiron though. I still have the occassional urgency/frequency, mostly when I get myself worked up, and/or anxious or nervous.
      Another ? How do you get yourself over the anxiety of going places when you go into remission? I still can't get over that. I can go anywhere no problem if its just me and Mike, but the minute he suggests going with other people I start to feel really nervous and usually cause myself to have the urgency and frequency. I'm trying to take baby steps to try to get over it, but its taking so long!!!! (ie-3 good trips + 1 flare on a trip =back to where I started) Any suggestions???

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      • #4
        Remission to me is to feel like I DO NOT have IC. No pain/urgency nothing. Right now I am having some pain and urgency but I can manage it unlike this last month.

        I have never noticed that stress triggers much for me. I am a very nervous/anxious person ALL the time. I wa SUPER stress when my son was born 8 months ago. Now, I'm fine as can be and in a flare! Go figure! Anyway, maybe thinking about having a flare is causing your brain to make one. I know I can make my symptoms worse when I concentrate on them.
        Mom to:
        Ella~born 10/14/03
        Travis~born 5/8/06

        Meds:
        Elmiron~2pills 2X a day
        Elavil~50mg at bedtime
        Had great results with this for almost 2 years. Currently in a flare since 1/9/07 Trying Urised, lidocane cream, Cystoproteck and now Benadryl at night to try and stop it.

        Comment

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