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  • New With Some questions

    Hi my name is Patrick, I was diagnosied with IC yesterday after the cytoscopy. My symptoms are Urinary Frequency, and Urgency which are driving me crazy peeing constantly. Some days I go about 30 times a day, and other days I feel normal. Night Time I can go up to 5 times a night being woken up with a full bladder.

    I have no pain only just slight bladder spasms or tingles which does not bother me too much.

    The doctor has put me on 3 medications called Elmiron, Elavil, and Hydroxyzine. Do any of these medicines help with the frequency and urgency? Upon researching it seems the last two really only help with pain and Elmiron coats the bladder. Do any of these help with the frequency and urgency? If not what meds can help with that?

  • #2
    I am also on those 3 meds, and have had great success. Hydroxyzine is my #1 IC drug; it has helped me more than the other two combined, I think. If I am flaring, it is generally due to allergies, which Hydroxyzine treats.

    Edited to add: I know a lot of people with frequency and urgency are treated with drugs for overactive bladder, and have good results. You may want to talk to your doctor about one of these. And the IC diet is also extremely important for calming your bladder down.
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!

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    • #3
      What is flaring? Is it just pain or frequency?

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      • #4
        A flare is generally when the problems you have associated with IC are active. These have varying degrees of severity. You may have a moderate flair that last a month or a severe flare that last for 3 hours. It all depends with the person and the reason for the flare.

        For example the month before my diagnosis I had a month long severe flare. While I don't have pain with my IC I experienced frequency and urgency so horrid. Going every 5 minutes even at night and even after voiding I still felt like I had to go.

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        • #5
          nineteenwinters do you get these flares even when your on all your meds?

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          • #6
            I haven't had a flare since I have been on my meds. However I am also on the IC diet. I have only had IC for 2 months and was diagnosed the second. I am fairly new to everything still. I am trying the diet to see if it helps or how much it helps me. I was on it strict for 1 month while I was recovering from the flare that started 2 months ago. My first and only flare was triggered by my first ever UTI. It also got worse when I was on my period so it could be hormone induced as well.

            So right now I don't know if it's the meds or diet or both that is helping. Unfortunately to learn this I am risking getting a flair by trying new foods. But I just need to know. So far I have tried Lucky Charms (testing because I like the cereal and there are several preservative no-nos in there). No flare from that. Today I tried half of a small no-caffeine root beer from Carl's Jr. with lots of ice. So far no flare.

            While I have a long way to go before I can say either way if the diet is helping me at all I at least have a few of my questions answered. Trisodium Phosphate is a trigger for a lot of ICrs and it was in the Lucky Charms so I will probably be OK to ear other foods that have that in there as long as it is at or lower than in the Lucky Charms.

            I have a feeling I will be able to tolerate a tad bit more than other ICrs just because I do not have any allergies to foods like dairy or gluten or preservatives and I don't appear to have chemical sensitivities. Also I (and my Doctor) because my IC was caused by excessive and chronic Red Bull abuse and literally eroded my bladder lining. I never drank soda or coffee just Red Bull but I was a 1-3 a day for 5+ years drinker. So for me the plan is to heal my bladder on up and besides Red Bull and anything else highly acidic or high in caffeine I will be able to eat anything I want in moderation.

            But everyone is so different with IC so I could be a rarity in that.

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            • #7
              Originally posted by nineteenwinters View Post
              I haven't had a flare since I have been on my meds. However I am also on the IC diet. I have only had IC for 2 months and was diagnosed the second. I am fairly new to everything still. I am trying the diet to see if it helps or how much it helps me. I was on it strict for 1 month while I was recovering from the flare that started 2 months ago. My first and only flare was triggered by my first ever UTI. It also got worse when I was on my period so it could be hormone induced as well.

              So right now I don't know if it's the meds or diet or both that is helping. Unfortunately to learn this I am risking getting a flair by trying new foods. But I just need to know. So far I have tried Lucky Charms (testing because I like the cereal and there are several preservative no-nos in there). No flare from that. Today I tried half of a small no-caffeine root beer from Carl's Jr. with lots of ice. So far no flare.

              While I have a long way to go before I can say either way if the diet is helping me at all I at least have a few of my questions answered. Trisodium Phosphate is a trigger for a lot of ICrs and it was in the Lucky Charms so I will probably be OK to ear other foods that have that in there as long as it is at or lower than in the Lucky Charms.

              I have a feeling I will be able to tolerate a tad bit more than other ICrs just because I do not have any allergies to foods like dairy or gluten or preservatives and I don't appear to have chemical sensitivities. Also I (and my Doctor) because my IC was caused by excessive and chronic Red Bull abuse and literally eroded my bladder lining. I never drank soda or coffee just Red Bull but I was a 1-3 a day for 5+ years drinker. So for me the plan is to heal my bladder on up and besides Red Bull and anything else highly acidic or high in caffeine I will be able to eat anything I want in moderation.

              But everyone is so different with IC so I could be a rarity in that.

              Wow your IC was caused by excessive red bull (caffeine). I can tell you without a doubt my IC was caused by overdosing on fat burners and using them more than 8 weeks straight. The fat burner said to take 2 a day I would take 3-4, and use it longer than recommended. Maybe if its caused by caffeine the only symptoms are urgency and frequency. Does anyone else think they got IC from caffeine?
              Last edited by nobleking; 08-23-2011, 11:41 AM.

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              • #8
                I think it was more the acid than the caffeine but both are really harsh on the bladder.

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