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  • #16
    Elmiron shortage - ordering from Canada

    Thank you to everyone who is posting updates and info about Elmiron shortage. This is truly disgraceful! Talking to the manufacturer is useless because they won't give specific information. This should not be allowed to happen! My pharmacist has no information about when the drug will be available, but she did tell me that the FDA is fed up with drug companies because they are doing this more and more and that they (the FDA) are making a mandate that the drug companies have to give the FDA 6 months advance notice if they are going to stop/slow down producing a drug. I am not sure when this will take affect.
    I ordered from NorthWest Pharmacy in Canada. Should have my shipment in 2-3 weeks. The drug is made by the same company, but in their Germany plant. You must pay out-of-pocket. It is costing me $199 with shipping for 100 pills. I am really hoping I will only have to do this once because that is a big expense for me and I had to put it on a credit card. I truly hope I am getting the "real thing". It is a gamble! This pharmacy is a real legitimate pharmacy in Vancouver Canada. If anyone else is going to order from Canada, PLEASE be careful. Do not order from any company that does not want a prescription and call and ask where they are located. Make sure they really are in Canada. This was my pharmacist's advice.
    Best of luck to everyone who is trying to deal with this crisis. It is so sad that there is no generic for Elmiron. We have enough to deal with and don't need this added stress!
    Diagnosed in June 2008. Symptoms began in 1998.
    Also diagnosed with Sjogrens, APLS, IBS, & GERD.
    Medications:
    Elmiron 400 mg, Protonix 40 mg, Tramadol 25 mg, Plaquenil 200mg, iron, Vitamin D 100 IC , Calcium 2 tablets, Fish Oil 2 tablets, Claritin, Biotin, Pro-biotic, & restastis eye drops.
    It took a year for the Elmiron to work, but it has really made my life with IC bearable.

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    • #17
      I figured I'd share my story as long as everyone else is having trouble...

      I live in the Raleigh, NC area and typically get my prescriptions from the NCSU pharmacy because, as a grad student, I can get medications with only a $20 copay there. They don't keep the medication in stock but only order it each month specially for me. At the end of May, they called to tell me that the medication was on backorder. I was lucky enough to get it at Walgreen's--although it cost me $200, which I couldn't really afford on a grad student's salary.

      My pharmacy had told me that their wholesaler was expecting more on July 15, but then I started reading everyone's stories (I've been snooping around here for a while but was always too shy to join...) and realized that was probably untrue. I started taking 2 pills a day instead of 3 in order to try and keep myself with medicine for as long as possible.

      I'm just about out--a total of 4 pills left. I asked my pharmacy yesterday if their wholesaler had been lucky enough to get any early (no) or if they were at least still expecting it by the 15th, and I was told that now they have NO IDEA.

      I called Walgreen's. None.

      I saw that a few people on here had had luck with their CVS stores, so I called about 15 stores in my area yesterday. Nobody had any Elmiron. Nobody even knew what it was and had to ask me stupid questions like could I spell it and was it a generic when I asked them about it. 15 stores. Nothing.

      I tried 2 Wal-Mart stores and a Sam's Club. Nothing.

      I called my doctor's office. He can't even see me to try to put me on different medication until the 20th. The 20th. By then, I will have been without my real dosage of medication for close to 2 months and without any medication at all for well over a week. I was doing extremely well on the medication; just knocking it back to 2 pills per day has already made me notice that things are starting to get, well, pretty awful again.

      I have even gone so far as to call a couple of stores in New Jersey, where my dad is willing to pick up the medicine and mail it to me overnight. Nobody has it.

      This is beyond unacceptable. Elmiron retails for a ridiculous amount of money as it is. It's the ONLY DRUG THE FDA WILL APPROVE, and yet there's not even anything in place to make sure that things like this don't happen to us?? I'm pretty disgusted by the whole thing, and I'm really not looking forward to the whole playing around with drugs game again. On the other hand, I'm pretty sure I'd rather not give these people any more of my--or my evil insurance company's--money.

      Thanks a lot, Ortho-McNeill-Janssen. THANKS A LOT.

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      • #18
        I live near chapel hill. Did you call Kerr Drug in Hillsborough, NC? They had 60 pills last week. Call them asap.

        Gina
        Tried but failed:
        aloe vera (6 weeks)
        cysto/hydro
        cystoprotek
        elmiron (quit because of diarrhea) after one week
        restarted gradually and fine now since July 1/2011
        gelnique: made me feel like a zombie


        On now:
        elmiron: 200 mg twice a day
        levsin: every 4 hours
        ativan: bedtime only
        PT for pfd. Amazing for my muscles.

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        • #19
          Originally posted by giabella View Post
          I live near chapel hill. Did you call Kerr Drug in Hillsborough, NC? They had 60 pills last week. Call them asap.

          Gina
          Thanks for the tip, will do!

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          • #20
            I was very fortunate today. After calling several CVS stores in my area, I was finally able to get a month's supply of Elmiron. None of the phamacist had any idea when they would get more in or what they problem actually was. I am also fortunate to live in a large area with lots of drugstores. My prescription is with CVS and there are many in the Atlanta area. Since I have a co-pay on my insurance, I had to get a full months supply or it wouldn't be covered. Elmiron is so expensive!!! I do wish they would come up with a generic version.

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            • #21
              I found 50 in fuquay-varina in nc. I thought I stepped back in time. The store was very quiet and sterile. Good home bred folks. The phone they had was a pink rotary phone! I am cutting back on my dosage and adding aloe Vera. I live in Cary, NC.

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              • #22
                My CVS pharmacy has recieved a shipment of Elmiron and will be able to fill my perscription. Last month they didn't hve any and had to send me across town to another CVS to get some.

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                • #23
                  anyone heard from the manufactuer yet? is the shortage still on. i know i don't need mine refilled for awhile but just checking in

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                  • #24
                    Elmiron

                    Thankfully I was able to get another 30 day supply from CVS. My doctor just shook his head......about the shortage.

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                    • #25
                      I was told by the Air Force pharmacy here in Anchorage that they would not have any until Aug 9. The local Wal Mart had 3 months for me.

                      Suzanne

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                      • #26
                        I haven't had a problem with the shortage here. I might have to wait a few days to get the full prescription, but usually the pharmacy has at least been able to get me 3-5 days worth; then they notify me that the rest is in stock.

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