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Elmiron increased burning,urgency and frequency . Anyone ?

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  • #1

    Elmiron increased burning,urgency and frequency . Anyone ?

    Hello Everybody,
    I was diagnosed with IC in Jan.My doc after seeing the bladder pictures said that it is a severe case IC .My problems are constant pain in bladder and frequency.

    While trying medicines before my diagnosis in Nov 2006 , I took Elmiron for 3 weeks but had to discontinue as it increased pain and frequency.I also started having urgency which I never experienced before.All these problems reduced after I stopped taking it.

    Has experienced similiar problems with Elmiron ?

    Thanks
    Tags: None
  • #2
    elmiron

    I took elmiron last year for about 7months and it was great until I went off it
    then started to take it again this year, I have lasted 2months and stopped it yesterday. I think the burning, urgency is a side effect just like the nausea, hair loss, ringing in ears, dizziness.

    Hope you feel better

    =)
    Shireen
    Happy Thoughts Always

    Comment

    • #3
      I tried elmiron for a month and a half and just when I thought it was starting to work, I suddenly got worse! A lot worse...with real pain vs. the low level burning that I used to have and more frequency. Now, I feel like I did back when I was first struggling with IC. I've not felt like this since my early days...nearly four years ago. It's so disheartening.

      Anyway, I've decided to stop taking it for awhile and see if I start to improve. If I'm still feeling this way, maybe in a month or so I'll restart it and give it a shot for a longer stretch.

      What's been helping me lately is keeping a pain journal...it helps me remember my pain levels and see any patterns, etc. I'm just trying to remind myself that I got into remission before and I can do it again. What helped last time were antihistamines, xanax, diet and time. I'm crossing my fingers it will work again.
      mom_in_ma

      Comment

      • #4
        You're not alone!

        Elmiron made me much worse. After about 2 months of taking it, my frequency & discomfort went up, I had a constant sense of "tickling" inside my bladder. It was very unpleasant. I also developed such urgency that I couldn't even make a half hour drive home from work without stopping at a restroom halfway there. So, I stopped the Elmiron and about 2 weeks after I stopped it, I returned to my previous level of symptoms. (Not great, but way better than on it.)

        I called Elmiron's manufacturer & spoke with a nurse. She said that there is a very small percentage of sulfa-allergic patients who have trouble with Elmiron. So, that might be the case for you, as it seemed to be for me, if you are also allergic to sulfa.**
        **NOTE: THE NURSE SAID MOST PATIENTS WHO ARE ALLERGIC TO SULFA DO NOT HAVE ANY TROUBLE WITH ELMIRON, WHICH IS WHY NEITHER MY DOCTOR NOR THE PHARMACY RED-FLAGGED IT FOR ME. Please don't PM me on this - you've now heard all I know. Sorry to be so blunt about it, but the last time I posted this I got volumes of panicked messages about it (even though I said then everything I just said now).

        It was important information for me & that's why I'm posting it, because several of my doctors fussed at me when I said I got worse on it & acted like I'm the only one on earth this happened to. It does happen, not often, but it does happen. And it really stinks when it does backfire because we place so much hope in it & so many people act like it's the be-all, end-all of IC treatment.

        Yes, it's great when it works for people, but there are still other treatments out there & it's possible to get better even if you can't take it-- I did!
        Kadi

        -------------------------------------------------------------
        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "

        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment

        • #5
          Kadi,
          That's really interesting. I'm actually really allergic to Macrobid (a sulfa based drug) and get very ill when I take it. That could be it!
          mom_in_ma

          Comment

          • #6
            Interesting about Macrobid.

            I'm really allergic to sulfa meds, but Macrobid is now literally the only oral antibiotic I'm NOT allergic to.

            Sometimes IC and all the weird issues that go with it make me
            Kadi

            -------------------------------------------------------------
            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "

            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment

            • #7
              Ugh...I totally agree. I just can't find rhyme or reason to any of this. I can feel good for a week...then feel horrible...yet I've done nothing different.

              By the way, glad the strike is over for you! Hope you're feeling better about getting through those last tough weeks.
              mom_in_ma

              Comment

              • #8
                re

                at first...the freuqncy increased...but i attributed to the large glass of water i just drank w/ it.

                the frequency went away in a few days

                i ended up quitting elmiron anyway..due to hair loss
                Quit ELMIRON due to hair loss
                Cystoprotek ROCKS!

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

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

                Comment

                • #9
                  Many people have reported that the elmiron capsule itself is the problem and if they empty the capsule into water and take it that way, discarding the empty capsule, it doesn't cause a problem.

                  I had to stop taking it due to a rare headache side effect, but am considering trying it again.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.                   [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment

                  • #10
                    I am allergic to Sulfa drugs but like someone else mentioned -- my doctors/and pharmacy didn't redflagged my Elmiron as most patients can tolerate these medications.

                    Comment

                    • #11
                      Thanks Kadi and all of you.Only medicine available for IC and one cannot take it due to allergy.Now this is a bummer.
                      I think I will try it again along with antihistamines to see if it works this time.
                      Otherwise I will try alternatives Cystoprotek and Desert Harvest Aloe Voera.

                      I read that if you experience allergies with Sulfa drug you should de-sensitize it by taking small doses for some time so that body gets used to it.I dont know I was only taking 1 Elmiron a day and it worsened my symptoms pathetically.

                      Comment

                      • #12
                        Frankly, my experience with Elmiron was so miserable, I'd never touch the stuff again, with or without an antihistamine. And I'd be very careful with the desensitizing idea, make sure you do that only with your doctor's approval, sounds like it could be risky for some...
                        Kadi

                        -------------------------------------------------------------
                        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                        ------------------------------------------------------


                        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                        Source - Pinterest
                        "

                        Current treatments:
                        -IC diet
                        -Elavil 50mg at night
                        -Continuous use birth control pills (4-5 periods/year)
                        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                        -Pyridium if needed,
                        -Pain medicine at bedtime daily, as needed during the day several times per week
                        -Antibiotic when doing an instillation to prevent UTI
                        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                        -Dye Free Benadryl 50 mg at bedtime
                        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                        -Managing stress= VERY important!
                        -Fur therapy: Hugging the cat!

                        Comment

                        • #13
                          I have been taking elmiron for 10 days now and my pain is much worse. I'm not sure my doctor believes me! He says it may be coincidence -- I just happened to have a flair at the same time I started medicine. I am going to stick with it for a while.

                          Comment

                          • #14
                            Originally posted by pamelar67 View Post
                            I have been taking elmiron for 10 days now and my pain is much worse. I'm not sure my doctor believes me! He says it may be coincidence -- I just happened to have a flair at the same time I started medicine. I am going to stick with it for a while.

                            How are ya doing with the Elmiron now? Please update us!
                            Diagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.

                            Medicines:

                            Elavil 25 mg - 2 x a day
                            Elmiron 100 mg/3 x a day
                            Macrobid - after sexytime
                            Pyridium - as needed - it helps!
                            metformin - for PCOS

                            Stopped taking: Detrol LA 5 mg and Vesicare 10mg

                            Comment

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