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Elmiron manufactured in other countries - how do you get it?

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  • Elmiron manufactured in other countries - how do you get it?

    For those of you that use Elmiron manufactured in other countries, how do you get it? Elmiron isn't available from Ortho-Janssen right now, so I'm looking for another way to get it...I can't go without it. It goes by other names doesn't it?
    ~Ashley

  • #2
    I wish I knew. I have about 60 days worth of Elmiron left and don't have a clue as to how to get by without it. Until January, it's enabled me to live a normal life for twelve years now except for a few flares here and there. In January, I began to flare and I'm still in it! It's been horrible. I've tried three different kinds of instills and they just don't work for me! Now I'm wondering if the Elmiron I was taking earlier in the year was a bad batch or something now that they're saying they've halted shipping it due to a problem with the product being incomplete. Wonder how long that's been going on before it was discovered. I can't help but wonder if this is why I've been in a constant four month flare with no improvement.

    Please let me know if you find out how to get Elmiron elsewhere during this shortage. I always get my three months supply through Medco and they have none!

    Thanks!

    Thanks!

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    • #3
      My Rite Aid called other pharmacies until they found some Elmiron for me. Perhaps your pharmacy can do the same.

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      • #4
        Unfortunately, I've been getting my Elmiron in a three month supply through Medco, and they are out and don't seem to be looking around for it. I think they only deal directly throught he manufacturer. I guess I coul ask my doctor to write a new RX for it and take it to Walgreens where I have other prescriptions filled. They may be willing to look around for it. This really is an upsetting situation, but I guess we can pray that Ortho McNeil will be able to get this problems solved quicker than several months. Maybe they are using that time frame as a worst case scenario. For those of us who depend on it, I hope that's the case. Am grateful I have another couple of months worth left in my current supply. Good luck and thanks for the suggestion.

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        • #5
          I just got my RX today...my pharmacy still had it because I'm the only one that's on it. The pharmacist said she'd let me know if it didn't come in when she ordered it and I'll call around and see if any of the other pharmacies have it then I guess.
          ~Ashley

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          • #6
            Good for you that you got yours. I'm not able to order even if I wanted to until 7/15 because I order a three month supply from Medco and can't order again until I'm more than half way through the prescription. At least I have another month and a half worth of it before I run out.

            I wonder if there's any way I can have the pills that I am currently taken tested anywhere to make sure they are complete. I can't help but wonder if this long flare I'm in is maybe due to getting some of the incomplete product that may have been shipped out before the phamaceutical company discovered the problem.

            Does anybody have any idea how to go about doing that??

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            • #7
              I know pharmaceutical companies routinely test drugs for counterfeits. In 2003, fake Lipitor pills entered the supply chain and people were buying them at pharmacies. I hope if this is the case with Elmiron, Ortho McNeil recalls them.

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              • #8
                I just found about this yesterday when my pharmacy couldn't fill my prescription and joined the forum to find out if more people were affected by it. I normally only get a monthly supply from the local pharmacy and have only 5 days of pills left I cut my doses in half today so it lasts me another week, and in the meantime I'm hoping I can find another source. My doctor wasn't very helpful, saying my recent DMSO treatment was probably more instrumental in my improvement and that I can come off the pills. I really don't want to risk that. Vons pharmacy and CVS Caremark both told me they have no supply.

                I'll get a prescription from my doctor on Monday and try Walgreens. In the meantime, I would appreciate it if anyone was able to find it anywhere else and can let me know. My last resort will be eating up the $500 cost (without insurance) and try to order two packs from Canada myself.

                Comment


                • #9
                  If you find elmiron in a different pharmacy near you, you can contact that pharmacy and order your refill --- you need to give the new pharmacy your prescription number and tell them where the original prescription is on file --- you shouldn't need to have your doctor write a new one.
                  Donna
                  Stay safe


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                  • #10
                    Originally posted by chhhb View Post

                    I wonder if there's any way I can have the pills that I am currently taken tested anywhere to make sure they are complete. I can't help but wonder if this long flare I'm in is maybe due to getting some of the incomplete product that may have been shipped out before the phamaceutical company discovered the problem.

                    Does anybody have any idea how to go about doing that??
                    I don't know if there's a way to do that, but if they found out the incomplete products went out they would have had to recall them.

                    Honeymuffin, have you gotten RXs from Canada before?
                    ~Ashley

                    Comment


                    • #11
                      Thanks Donna, I'll try that. I'm going to Walgreens tomorrow morning but not very optimisitc.

                      LithEruiel - Nope, never had to before. I was trying different sites on the web yesterday in a panic and called a couple. Apparantly Monday is a national holiday in Canada so they'll let me know on Tuesday if they have it available. It was around $180-$220 for 100 tablets plus shipping on various sites. Even if they have it available, the fastest they can get it to me is 5-10 business days after Tuesday after they receive my prescription via fax.

                      To give some background, I was diagnosed in Jan with severe IC and Hunners' ulcers after suffering the symptoms for years and trying three different doctors. Been on Elmiron since and got the DMSO in April. Despite all that and doing the diet strictly, I had been on a non-stop six month flare and was getting quite depressed about all the lifestyle changes. After the DMSO treatments ended, I travelled out of the country for a three vacation to visit my family. Within a few days of arriving there all my symptoms magically disappeared! I even went off the diet and ate spicy and acidic foods and still felt great the entire time. Now that I'm back in the US, I'm flaring again No pain yet but definitely frequency, discomfort and nocturnia even though I'm back on the diet. I don't know if it's the stress of going back to work, sitting on my arse in the office all day or just something I can't identify in the food and water here...All I know is I'm not ready to go off the meds just yet and I need all the help I can get.

                      Comment


                      • #12
                        I totally think it's possible for the flares to be from stress and sitting all day. My IC is worst when I have class all day and I'm just sitting there bored and annoyed. I tend to feel better on break, but not always. I also have less frequency at work since I'm walking all day and so I'm busy I don't have time to think about how much I'm going to the bathroom.
                        ~Ashley

                        Comment


                        • #13
                          'generic' elmiron

                          I could not afford USA elmiron and now I see there is a shortage anyway. I ordered some from a reputable Canadian pharmacy for 300 pills for $495 which is still expensive but the co. that makes it in australia makes it for arthritis and for dogs under another name! OK I pulled apart the capsules and the substance seems about the same...but I got this big flare after switching from the real stuff to the australian stuff ( I wasn't sure it had been working anyway). Then I found a study online about comparing all the companies that make pentosan polysulfate sodium, which was news to me that several companies make it...but it said there was one making it for people and 3 making it for animals! It found subtle differences among the 3 making it for animals but didn't seem to compare it to the people one (Elmiron).I am really not worried about the australian stuff being bad for me because I believe it really is pentosan polysulphate, but what I do wonder about is whether it is as absorbable because Elmiron is so poorly absorbed to begin with. It takes me months to get a an appt. with the urologist so that is not going to resolve this now. Besides it was I that requested the prescription from the nurse to get the canadian pharmacy to order it and she complied. That is all I know.
                          I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                          Comment


                          • #14
                            Thanks for the info! Wonder if they use it for feline idiopathic cystitis?

                            What is it called in Australia?
                            ~Ashley

                            Comment


                            • #15
                              ordering "elmiron" from Canada

                              There are pharmacies in Canada that are CIPA certified, but that does not mean that the drugs come from Canada. They get the drugs internationally. I don't know what Canadians get for Elmiron in Canada. In other words are these Canadian pharmacies selling just to outside Canada? I'm not sure. As I said before the drugs they get are from other countries. It seems these phamacies get "Elmiron" from arthropharm in Australia and that they make pentosan polysulphate sodium but it is not exactly clear if it just for dogs or for people, too but somehow Canada can get it to us. You can see the arthropharm website from Australia. The bottle says Elmiron and that it is for the bladder and the pill has ELM printed on it. Since I don't know how well the real Elmiron was working, it is hard for me to compare. I know it is cheaper. If this is illegal wouldn't the FDA ban it's import? I got mine from affordable drugs but there are other Canadian phamacies. Each has its own shipping charge policies and pricing so I had to search around. They let me email a copy of the prescription to them instead of actually mailing the original which I liked, so I did not have to worry about it getting lost in the mail, etc. Maybe this would help some of you if the Elmiron shortagae goes on a long time. Any explanation for that?
                              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                              Comment

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