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  • Elmiron Shortage Temporary!

    We've had a few phone calls late last week and early today from patients panicking about refilling their Elmiron prescription. Some pharmacies have mistakenly told patients that Elmiron was unavailable with no anticipated return date.

    We called the company today and learned that Elmiron was actually on backorder. It is expected this week at the manufacturers and should be sent back out to pharmacies by the end of the month! Disaster averted for those of you who have good results from this medication.

    If you are running low, ask your doctor if it would be okay to reduce your dosage to stretch those remaining capsules out until the new medication becomes available again.

    Jill O.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    I just received a phone call from Medco. They told me that the Elmiron is not available. When I went to the manufacturer's website they have an update in the top right hand corner that says the shortage could last for several months.

    Is this an old update? This is the first time I've looked at the site for information on this. I sure hope you're right Jill and the news on the site is old. Thanks.

    Comment


    • #3
      I had to call 5 pharmacies before I found one that had Elmiron in stock so I called the manufacturer on Monday and they told me they were starting to send supplies back out starting this week.
      Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

      Current medications/treatments:
      Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

      Previous medications/treatments:
      Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

      Comment


      • #4
        UPDATE: I just called again and was told that the information on the website is correct. There IS a shortage and it will be several months before Elmiron will be shipped out again. Apparently there was just a meeting this morning where they were told that there was "incomplete product" prepared during manufacturing that did not meet the acceptable guidelines so all shipments are suspended for the time being. The representative told me that any medication that is out there is safe to take but that it could be very hard to find and that we should "make arrangements with our doctors to plan accordingly." This is very disturbing news.
        Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

        Current medications/treatments:
        Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

        Previous medications/treatments:
        Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

        Comment


        • #5
          I also called after my post and was told the same story. I got the impression that production was shut down by the FDA. They say what we have is currently safe but how do we know that we haven't been receiving "unfinished" product all this time? They told me "unfinished" and phoenixgirl "incomplete".

          I'm hoping it's just a coincidence but on the 16th the same day that Jill posted her original comment I received an email from Amazon.com that my cost for Cystoprotek with the Subscribe and Save program went from $27.97 to $40.47! That's a huge increase.

          I spent hours on the phone with my doctor, Medco, Highmark trying to find out how to get my prescription filled. Medco is out and one pharmacy here had a limited amount left on the shelves. I had to pay a ton more because I couldn't get the 90 supply through mail order.

          It's a medication that only works for some people some of the time, by their own admission the manufacturer doesn't exactly know how it works, they charge ridiculous prices for it and it takes months to take effect. It's the only medication of it's kind on the market and for those of us who think it is working we're left rationing our medication and have no idea when it will become available. This is very upsetting. I guess the only positive thing I can say is when we're forced to stop taking our medicine maybe we will find out if we are truly wasting our money or not.

          Comment


          • #6
            Jill,

            Do you have any further information on this? I called my pharmacy and reserved the last bottle for myself today. They said they are trying to order more for next week. They state that only me and one other person that go to that pharmacy are on Elmiron so it'll be me and her duking it out. I plan to decrease my dosage to 2 times a day since I'm doing fairly well. I was just wondering if you heard anything else.

            Thanks,
            Your Friend,
            Michelle

            Diagnosed: 10/16/09

            Elmiron, 100mg 2x per day
            Imipramine, 10 mg per day
            Diazepam 10 mg for sleep
            Zyrtec
            Zovia, birth control (ongoing-no periods)
            Probiotics
            Hydrocodone, 2 pills a day (at any time of day)

            Comment


            • #7
              I use Elmiron and had to do without it for a month when I had open heart surgery in November.I didn't have any problems during that time. I may cut back to 2 a day to stretch it out. I'll call my Dr. on Monday.

              Comment


              • #8
                This is terrible. Fortunately I have extra, but I don't know how much extra I'll need... I don't know what to do. I guess I'll call my doctor Monday, but I doubt there's anything she'll be able to tell me to do (except cut down)...I don't have insurance and I'm sure instills will be ridiculously expensive. Cystoprotek doesn't work for me either. I WAS doing really well, now who knows. I'm graduating in July and I have to take nursing boards and get a job...now who knows what's going to happen.
                ~Ashley

                Comment


                • #9
                  Elmiron shortage

                  I to have called Medco, shame on them for not calling me. I also callled my Uro. she is as upset as us. For some instills will work, but for other like me Elmiron seemed to finally make a difference. Now, I remember what it was like before. Guess I get my boxing gloves back on, because I will be doing battle with Pain. At least for now I can do the battle.

                  Sweet Texas Hugs, Jane
                  Sweet Texas Hugs,
                  jane2

                  Comment


                  • #10
                    i just read its manufactured in puerto rico on the pi.. do we really know what we are taking? sigh
                    Newly IC diagnosed as of February 2011.

                    Medications I'm on that seem to work:
                    Zoloft- one once a day
                    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                    Failed Meds:
                    Elmiron-after 4 months,digestive side effects got to be too much
                    tramadol-allergic
                    DMSO treatments(5-6)
                    probiotics

                    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                    AROMATHERAPY-candles,incense
                    Village Naturals Aches and Pains Peppermint Bath Salts
                    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                    ACUPUNCTURE/HERBS
                    Significant pain relief so far.

                    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                    Add me on facebook Angela Hasic

                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Lord, make me an instrument of your peace;
                    where there is hatred, let me sow love;
                    when there is injury, pardon;
                    where there is doubt, faith;
                    where there is despair, hope;
                    where there is darkness, light;
                    and where there is sadness, joy.
                    Grant that I may not so much seek
                    to be consoled as to console;
                    to be understood, as to understand,
                    to be loved as to love;
                    for it is in giving that we receive,
                    it is in pardoning that we are pardoned,
                    and it is in dying [to ourselves] that we are born to eternal life.

                    Comment


                    • #11
                      i found this link apparently its not the first shortage ever to happen 2010http://cobf.websitetoolbox.com/post?id=4746356
                      Newly IC diagnosed as of February 2011.

                      Medications I'm on that seem to work:
                      Zoloft- one once a day
                      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                      Failed Meds:
                      Elmiron-after 4 months,digestive side effects got to be too much
                      tramadol-allergic
                      DMSO treatments(5-6)
                      probiotics

                      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                      AROMATHERAPY-candles,incense
                      Village Naturals Aches and Pains Peppermint Bath Salts
                      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                      ACUPUNCTURE/HERBS
                      Significant pain relief so far.

                      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                      Add me on facebook Angela Hasic

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Lord, make me an instrument of your peace;
                      where there is hatred, let me sow love;
                      when there is injury, pardon;
                      where there is doubt, faith;
                      where there is despair, hope;
                      where there is darkness, light;
                      and where there is sadness, joy.
                      Grant that I may not so much seek
                      to be consoled as to console;
                      to be understood, as to understand,
                      to be loved as to love;
                      for it is in giving that we receive,
                      it is in pardoning that we are pardoned,
                      and it is in dying [to ourselves] that we are born to eternal life.

                      Comment


                      • #12
                        Ugh. It's such an important med for so many of us...how can they let this happen?

                        On the ICN's facebook it said there'd be an announcement about the generic this week...well it's Friday night...
                        ~Ashley

                        Comment


                        • #13
                          dont know hon.. they also predict the world will end today.. strange times we live in.
                          Newly IC diagnosed as of February 2011.

                          Medications I'm on that seem to work:
                          Zoloft- one once a day
                          Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                          Failed Meds:
                          Elmiron-after 4 months,digestive side effects got to be too much
                          tramadol-allergic
                          DMSO treatments(5-6)
                          probiotics

                          THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                          AROMATHERAPY-candles,incense
                          Village Naturals Aches and Pains Peppermint Bath Salts
                          Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                          ACUPUNCTURE/HERBS
                          Significant pain relief so far.

                          MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                          ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                          Add me on facebook Angela Hasic

                          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                          Lord, make me an instrument of your peace;
                          where there is hatred, let me sow love;
                          when there is injury, pardon;
                          where there is doubt, faith;
                          where there is despair, hope;
                          where there is darkness, light;
                          and where there is sadness, joy.
                          Grant that I may not so much seek
                          to be consoled as to console;
                          to be understood, as to understand,
                          to be loved as to love;
                          for it is in giving that we receive,
                          it is in pardoning that we are pardoned,
                          and it is in dying [to ourselves] that we are born to eternal life.

                          Comment


                          • #14
                            I kind of hope it does.
                            ~Ashley

                            Comment


                            • #15
                              too much elmiron

                              how ironic that i have a huge bottle that i can not use. after a year all i did was lose hair. doc took me off right after i refilled script.

                              we need a better drug!
                              nyeema

                              Comment

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