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  • Elmiron off the market?

    So I was talking to my pharmacist today and he informed me that Elmiron is being taken off the market. Anyone else hear this?? If so, why?

    Nancy
    Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

    Had a UTI in Oct 2009
    IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

    Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

    Diagnosed fibromyalgia/lyme disease in 1999
    Acid reflux since 1998

    Have tried the following therapies:
    pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
    Ativan-helps some
    Vicodin-some relief.
    ditropan-only caused fluid retention
    toviaz-same as abovee
    detrol-no relief
    hydroxyzine-get some relief but not for urgency
    valium-helps relax the muscles
    flexeril-same as the valium
    B&O suppositories-they help a little
    started estrogen cream
    starting effexor soon

    Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

    current meds and treatment:
    nexium
    ativan
    valium suppositories
    hydroxyzine
    IC diet
    methenamine mandalate
    estrogen cream
    effexor
    B&O suppositories

    Had bladder instills but this made the urethra spasms much worse.

    Had hernia repair with fundoplication dec, 2011

    Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

    Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

    Husband is my biggest supporter. I need the urgency to go away. What helps??

  • #2
    elmiron

    After months of struggling with a bad flare that has not responded to anything yet, my uro suggested that I go back on Elmiron (I stopped it over a year ago since I was in a remission). I went to the pharmacy and they did not have it. They found it at another pharmacy and are having it sent to them, but they told me they have been having a hard time getting it. Not sure why. And my darn insurance barely covers any of the price
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

    Comment


    • #3
      For a time there was a manufacturing glitch, but it should be available. Hopefully very soon there will be a generic available, which will cut our costs considerably.

      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


      • #4
        Where do pharmacist get this information? I haven't heard anything about any problems lately either. I am just wondering about the pharmacist because I have seen this happen with other drugs as well. A manufacturing delay and people are told it is off the market. They don't realize the terror they cause some with chronic illnesses, do they?

        Glad you were able to find it somewhere else.
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          I hope you are correct Donna. Terror is a good word for how I feel about it. I thought it was a glitch but they started making it again. I respect pharmacist. Often they understand meds better then Doctors. Praying this one had false information this time. Thank you all for the information. Please keep us up on any infor you get. Hug, Ziggy

          Comment


          • #6
            I have never had a problem getting this or any other medication. Sure there are times that they didn't have enough to fill my prescriptions but they always either had some for a few days or if not they would call other pharmacies for me.

            Comment


            • #7
              Im not sure whats going on. I spoke to my current urologist today and he said its in limbo whether or not they will continue manufacturing the drug? I dont get it either. Anyone else find out anything different from their pharmacy?

              Nancy
              Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

              Had a UTI in Oct 2009
              IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

              Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

              Diagnosed fibromyalgia/lyme disease in 1999
              Acid reflux since 1998

              Have tried the following therapies:
              pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
              Ativan-helps some
              Vicodin-some relief.
              ditropan-only caused fluid retention
              toviaz-same as abovee
              detrol-no relief
              hydroxyzine-get some relief but not for urgency
              valium-helps relax the muscles
              flexeril-same as the valium
              B&O suppositories-they help a little
              started estrogen cream
              starting effexor soon

              Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

              current meds and treatment:
              nexium
              ativan
              valium suppositories
              hydroxyzine
              IC diet
              methenamine mandalate
              estrogen cream
              effexor
              B&O suppositories

              Had bladder instills but this made the urethra spasms much worse.

              Had hernia repair with fundoplication dec, 2011

              Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

              Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

              Husband is my biggest supporter. I need the urgency to go away. What helps??

              Comment


              • #8
                Originally posted by Nal View Post
                Im not sure whats going on. I spoke to my current urologist today and he said its in limbo whether or not they will continue manufacturing the drug? I dont get it either. Anyone else find out anything different from their pharmacy?

                Nancy
                Oh my goodness! I hope your Urologist is incorrect. I think I will lose all hope without Elmiron!! I've been on it 9 months now and am finally starting to feel better. I really hope they keep it on the market.
                ~Valery~
                Dx with IC 3/2009 - Cysto w/Hydro
                Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)

                Comment


                • #9
                  I agree. It didn't help me but since there seems to be so little that helps thus horrid disease or whatever you want to call it, we need all these mess to stay on the market!!!
                  Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

                  Had a UTI in Oct 2009
                  IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

                  Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

                  Diagnosed fibromyalgia/lyme disease in 1999
                  Acid reflux since 1998

                  Have tried the following therapies:
                  pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
                  Ativan-helps some
                  Vicodin-some relief.
                  ditropan-only caused fluid retention
                  toviaz-same as abovee
                  detrol-no relief
                  hydroxyzine-get some relief but not for urgency
                  valium-helps relax the muscles
                  flexeril-same as the valium
                  B&O suppositories-they help a little
                  started estrogen cream
                  starting effexor soon

                  Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

                  current meds and treatment:
                  nexium
                  ativan
                  valium suppositories
                  hydroxyzine
                  IC diet
                  methenamine mandalate
                  estrogen cream
                  effexor
                  B&O suppositories

                  Had bladder instills but this made the urethra spasms much worse.

                  Had hernia repair with fundoplication dec, 2011

                  Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

                  Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

                  Husband is my biggest supporter. I need the urgency to go away. What helps??

                  Comment


                  • #10
                    Elmiron still being distributed

                    I just checked their website and it says they have started distributing elmiron again. It maybe just that pharmacy where you get it from usually. Their ordering maybe different now due to that shortage. Check with other pharmacies you may have to switch to another one. Every pharmacy orders differently sometimes them themselves no longer order from a certain company or discontinuing ordering certain drugs. Good luck I know how important elmiron is to us with sensitive painful bladders. I still depend on it too.

                    Comment

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