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Elmiron Shortage Temporary!

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  • #91
    Thank you for the reply.

    I was told flat out they are not making it anymore. I feel so sick.

    I have 1 pill left. I shouldn't have let it get so low, but I just had no idea. I have been preoccupied with other life stuff and expenses.

    Where do I sign up to get the updates that people are talking about where they were prewarned about this???

    I am calling everywhere right now, and no luck so far with a few calls. The pharmacy wouldn't help me at all, since according to them , they are no longer making it. I don't understand how the pharmacist can tell someone something that is not true, how unprofessional. If she can't get it and she doesn't know, fine, but why tell something that is not based on facts. I did see the posting right on the FDA website on drug shortages (thank you for whoever posted that) that says there is a shortage etc. Wouldn't the pharmacy know to look at this site, and tell the correct information, rather than , " they are not making it anymore". I am worried she knows something I don't .
    Diagnosed with IC in 9/2005,
    Currently doing good, taking breaks from Elmiron, reduced amount.

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    • #92
      elmiron

      I can say at least in my region that there is no Elmiron available. I have ordered two 100 tabs from Australia. thank God. But I sure would like to know why some nations still have it and we here in America don't. I asked who ever answered the phone when I called manufacturer. Of course they don't have an answer. Some on Facebook have said Aug 15 or something date that their pharmacy said would an order would be in. I called on that also. Na Da. It is not true. Again the person answering the phone even said someone might have pulled a date out of the air to just get rid of the person. supposedly they are producing now. and again supposedly they are shipping orders out. I asked about that also. NO real data to back that one up either. I have heard of the generic made in India. We can always hope. I don't mean to be political, but with Cipro and Elmiron, as well as some HIV drugs not being available all at once just gives me the creeps. LIke I said before why other countries still have Elmiron on shelfs and we have none does baffle me.
      Sweet Texas Hugs,
      jane2

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      • #93
        Originally posted by pj77 View Post
        Where do I sign up to get the updates that people are talking about where they were prewarned about this???
        I got the news in my email from the ICA in mid-May. You can sign up on their website for news updates.

        When I received the email, I got my refill right away, and then I called my regular pharmacy on June 12 and was able to get more. I have gone down to two pills a day; I should have enough to last me through August at that rate.

        What I did need to do was call around to many pharmacies in my area, find one that had pills, and then have them transfer my prescription from my current pharmacy and fill it. You may want to try calling around; some may not have any, and others may be sitting on 150 pills. It's really not a very common medication, and most pharmacies just stock about one prescription's worth at a time.

        Oh, and because it's not common, a lot of pharmacists don't seem to know much about it. I got the same "Why don't I call your doctor and see if he wants to prescribe something else" reaction. Sure, go right ahead.
        Lori

        40 y.o. mom, wife and marketing manager

        "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

        IC symptoms began Feb 2010; diagnosed Mar 2010

        Treatments:

        Oral
        Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

        Other
        Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares

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        • #94
          Checked Elmiron website today 6/24/11

          the website still says it may be several months before Elmiron will be available!

          How can something like this happen? Dear God!

          I sure hope they can come up with a generic alternative soon this is totally ridiculous...they screwed up they should be working overtime to produce this product!

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          • #95
            Doctor office says made In Japan

            Hi my doctors office said yes they heard about the shortage and that Elmiron is produced in Japan and with the earthquake there is a shortage.
            "Put on your big girl panties and deal with it" good quote but but there sure are a lot of days i don't want to wear my big girl panties

            Have bladder problems most of my life.
            IC diagnosis Nov '05
            hyster Feb'06
            Hydro/Cysto Feb'06

            Meds:
            Taking Elmiron twice a day
            Elavil 20mg at night

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            • #96
              I wonder if your physician is mistaken. That is definitely not what I was told when I called the manufacturer. Also, if that were the case I would think they would be publicizing it. It would not look nearly as bad on their part if production was suspended due to a natural disaster.

              I'm not trying to look too much into this but the "Elmiron Shortage Update" in red lettering at the top of their website is gone. Could this be a good sign? I sure hope so.

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              • #97
                I looked again and in gray text it says, "Sign up for updates". I'm not sure if they are referring to the shortage or not.

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                • #98
                  Elmiron Refill

                  I requested a refill on my Elmiron last week through Medco (mail order pharmacy) and I received my 90 day supply today. Yeah! I believe Elmiron is available again.

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                  • #99
                    Just talked to medco yesterday when my order couldn't be processes and Elmiron is on their unavailable list, they have no anticipated date for when they will start receiving more. All the Walgreens in my area are out as well. Yikes! So definitely still a shortage. I'll be rationing what I have left just like everyone else.
                    Sarah

                    Dx: IC, fibromyalgia, PFD, chronic pelvic pain, vulvodynia, endo, ovarian cysts, pelvic congestion syndrome, Vitamin B12 deficiency, hypothyroidism

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                    • My CVS was out but they called another CVS in the area for me and I got 30 days worth. Better than nothing.

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                      • There are Medco warehouses all over the US (I used to work at Medco), so some of the may have it and some of them don't. Why they don't get it from the warehouses that do have it I don't know...probably because it would cost them more money, so they just tell you they don't have it and be done with it.

                        My pharmacy still doesn't have Elmiron either
                        ~Ashley

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                        • Elmiron Shortage caught me by surprise

                          The elmiron shortage caught me by surprise...Medco with no supply date, and local pharmacy said 2 weeks, and I learned the hard way the Elmiron was working! Symptoms I hadn't experienced so badly came back...only after a few days without it. Medco pharmacist said other patients report same. Lucky for me that I did get a supply 30 miles away. Thankful for this drug after all. Hope the shortage ends soon...this is like a scary story that I read about someone else except that it's me...how is it possible that the only med specifically for IC would be in short supply without alternatives...OUCH!
                          TLS

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                          • I took 300 mg of Elmiron daily for 2 years and have been taking 200 mg daily for more than a year now. I stopped taking Elmiron for a week at a time for different medical procedures and did not experience a worsening of my symptoms.

                            I am not advocating the following but for those of you who do research supplements etc. I am now taking one Desert Harvest Aloe Vera Capsule daily with good results. Desert Harvest specially prepares aloe vera so that it does not contain citric acid and does not act like a laxative because those components have been removed from the freeze dried product. Desert Harvest is located in COS.

                            There are reports of GI symptoms associated with initial use of the product by IC patients. I experienced a flare which coincided with use of the product however, I was convinced that something else must have been going on. I waited three weeks before trying the capsule again. I've been taking one capsule daily for two weeks and just started taking 2 capsules a day two days ago.

                            I did experience mild GI sensations, nothing that would worry me or prevent me from giving this product the benefit of the doubt. When I contacted Desert Harvest directly to explain that I had experienced some kind of flare etc. that coincided with use of the product, they reported that users have reported mild GI disturbances etc. while they become accustomed to the product etc. but no flares had been reported etc. Some patients do not tolerate the GI disturbance but in my case, I want to determine if the aloe vera is a worthwhile complement to Elmiron and if I might eventually stop taking Elmiron.

                            I received a note today from someone who said they'd heard that Elmiron won't be available for 7 months. Tomorrow, I will begin a serious search or Elmiron however, I don't have any information regarding the effectiveness, or lack thereof, of this medication. I can't honestly say whether Elmiron has helped or not because I am living relatively pain free most of the time. Searing pain was not my problem. I experienced significant pressure and some burning and a dull ache but I did not experience searing, hot pain etc.

                            I'm suggesting that if Elmiron is not available for you that you should research your options including baking soda, Prelief, PH Protector drops and teas from your natural food store, (apricot tea that alkalizes your PH), Cysta-Q, etc. Check into Desert Harvest to see if it might benefit you and of course, consult with your doctor too.

                            My IC symptoms improved immediately after bladder hydrodistension however, I do not consider hydrodistensio a treatment for IC. My symptoms improved steadily for a month before I began the Elmiron regimen therefore, I don't really know to what extent Elmiron has been responsible for my improvement except to say that I would not discontinue use of Elmiron unless the shortage forces me too.

                            I will begin to search for Elmiron tomorrow. I take 2 capsules daily and have enough for about 3 months if I'm lucky.

                            Thanks for your post.

                            Comment


                            • I saw on the ICA web site that India now has something called COMFORA for IC. Sounds like the same thing as Elmiron. Check it out, see what you think. I wonder if the maker of Elmiron knew this was coming, it might cost less and decided to throw the towel in and not make it any more. I am totally unsure if it will be sold in the USA. Please anyone who knows more about this let the rest of us know how to get it if possible. Shame on me for thinking a big company making the only med for IC would give out false information. Ziggy

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                              • elmiron shortage Wrote to the company

                                i tried to get some information from COMFORA in india... but was not successful. the website that jill had listed was not going through the other day, but i will try it again today and see if i can get some information.
                                That would be great if they are selling in in the US..
                                and if it would be cheaper.

                                The whole elmiron shortage, to me, is an outrage.... i have written a letter to ORtho McNeil stating such.
                                I also put in my letter how this is personally effecting me and others that i have spoken with.
                                MOST of all i told them about their outrageous pricing.... i ususally get mine from MEDCO and i pay 70.00 for a three months supply, which is very very good....However, since i had to go to the local CVS cuz MEDCO was out of elmiron due to their "so called" shortage, i had to pay $380.00 ...Being on disability, this really really hurt ....

                                the main thing i am angry about is the lack of information they have provided to us and especially, the whole "surprise" no more available!!!!

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