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"Industry Shortage" of Elmiron

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  • Sharyn
    replied
    Elmiron Side Effects

    I had 6 Elmiron instills. Didn't see any difference. Was on the tablets for 1 week. I had all the side effects so stopped taking it. I have asked my Uro if he will still give me instills in his office. When my back is hurting it seems the bladder also suffers. I am going to the back doctor next week, he may have some suggetions. There is a stress course, on line. I am considering taking it.

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  • earthlady
    replied
    Thanks. I would have never thought to ask about where the drugs were made. I've known people who have gone to India for surgeries and medical treatment because it is so much less expensive and found the doctors there have been trained here at Harvard or some other med school in the US. Comfora may be worth looking into for some people who can't afford the Elmiron in the states.

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  • Mothergoose
    replied
    They are an online pharmacy, they actually can be from any where, it is not like walking into a store and buying the product. Real pharmacies don't do this.

    One Canadian online pharmacy actually was a US pharmacy operating as a Canadian pharmacy, buying meds from India.

    The India products in my experience areas good as US or Canadian meds, but you should know where your meds are coming from etc.

    Things are just not always as they seem on the Internet.

    It is just buyer beware.

    As I said in previous post what bugs me is they buy from India, at a very cheap price and sell to people at the going rate for the country, that borders on robbery.

    MG

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  • earthlady
    replied
    Hey Mothergoose- thanks for the tip about the Canadian pharmacies ordering from India. Good to know. Curious as to why they are getting their drugs from India and not manufacturing them in Canada.

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  • Mothergoose
    replied
    I will have to look up the name and PM it to you I just think of the name right now.

    MG

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  • nineteenwinters
    replied
    I have seen you mention that a couple of times now. I will have to look in to that. I am a tad hesitant for some reason but I will have to research the heck out of it. Do you have a specific website where you have ordered from with success?

    Just a quick look and I am seeing a lot of $300 quotes. Or are you talking about the generic form? I would probably have to pass on that for right now just because I am so new to all of this.

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  • Mothergoose
    replied
    Reading this post and some other's I have noticed people are ordering Elmiron from Canada.

    Don't get me wrong I am not against getting it from where you can and for the best price.

    I have posted my experience with online Canadian Pharmacies before, but I feel I will just give this warning again.

    A medication I was on, which i took 8 pills a day all of a sudden had a manufacture shortage, I tried other meds in the class but they made me flare or did not work for me.

    I started calling around to online pharmacies, most said the shortage was everywhere and could not supply me with the med I was after.

    After lots of calls I found a pharmacy that said they could provide it, so I asked price, how long till I got it, etc. something just didn't seem right so I asked if they were a Canadian pharmacy located in Canada, they said yes, I asked do you buy your meds from Canadian companies or from aboard, they said they bought their meds from India.

    I thanked them and then went online and found a few Indian pharmacies, they had the same medication for pennies a pill, way cheaper than the Canadian pharmacies were charging me for the same pills.

    I ordered them from an Indian pharmacy. I got the order with absolutely no problems and the pills were just as good as what I was getting previous to the shortage. They were way cheaper than what the Canadian On line Pharmacy was going to charge me, for the same pills.

    I ordered these during the shortage with my Doctors okay.

    I am sure there are many legit Canadian pharmacies but if they are going to just order them from an Indian pharmacy and then sell them to you at Canadian prices they are making a lot of money off you, when you can order them from India direct way cheaper.

    I have checked Indian pharmacies do sell Elmiron.
    MG

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  • nineteenwinters
    replied
    Come on Comfora!

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  • earthlady
    replied
    Comfora is the generic of Elmiron made in India but I haven't heard anything about it being available here yet.

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  • Zygala87
    replied
    Yes as far as I understand, it does not help everyone. It has helped me. I eat some foods not on "the diet" but I waited for a year before I tried them. I am Blessed with good insurance so far. Who knows what will happen with all the changes being made in Washington. My Doctor told me I will be on it for the rest of my life. It does not bother me but I did lose hair which has grown back. I take one in the morning and one at night. I don't know if this information will help anyone. It is just what has been my experience. Hugs, Ziggy

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  • nineteenwinters
    replied
    I think it depends on the person myself. I eventually want to be able to get off the IC diet. The only way that's going to happen is to build up my bladder lining. Through a combination of diet and Elmiron that could very well happen. I am basically looking at the fact that 2 are better than 1. My doctor doesn't think I will have to be on Elmiron for life. He's thinking that in a year by bladder will probably be back to normal. From then it will be about eating better than I did 2 months ago and not drinking Red Bull which is what we suspect tore up my bladder lining and using Prelief for any acidic foods.

    So for me it's just to aid in recovery while the diet will do most of the work. If I had to be on it for life I don't think I would. Not until there's a generic at least. Some people prefer to just use diet and not the meds but I really, really hate most of the foods on the diet so I'd rather take the meds. I think if I didn't mind the diet the Elmiron wouldn't be neccessary as my body will repair the lining on its own given the correct diet.

    Elmiron is not as good by far (which is why it takes so long) compared to the bodys own repair system.

    Of course for everyone it's different. I am sure there are some people who have to be on it for a longer period or forever. I was fortunate that they caught my IC early before more damage could be done. So that's an important factor in why my Dr. doesn't think I'll be on it for life. In fact he said (and I agree) that as long as I don't have heavily spiced food, caffine, or alcohol I could probably get away with eating small ammount of like mustard, ketchup, mayo etc. But I am too afraid of having another flare so I am not going to try those for a few months at least.

    So in summary, if I didn't mind the diet as much as I do I probably wouldn't shell out the cash for the Elmiron.

    Leave a comment:


  • Winged1
    replied
    Is It Worth the Cost?

    Since I haven't used it yet, I only want to buy it, at any price, if it actually works. Maybe that's for another forum on here -- but honestly -- is it really worth the price? And if it supposedly rebuilds the GAG layer of the bladder -- why does a person have to take it for years? Just really wondering if I should try the stuff...and I guess I need to read about possible side effects also. I can tolerate a lot, but don't think I could deal with hair loss! ha! (vain, here, I guess) <-----that's me, complaining about hair loss! LOL

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  • nineteenwinters
    replied
    Yeah I hear you about every little bit helps. It's even a little cheaper if you get 3 months worth. I can't wait for a generic!

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  • Sharyn
    replied
    Elmiron

    Try Northwestern Pharmacy.com. It's a pharmacy in Canada. I just got a quote for 100 pills $189.00 + shipping. I take 3 pills per day, so that is basically 1 mo supply.

    Leave a comment:


  • Winged1
    replied
    Thanks!

    $185 is better than $250! Anything helps. I don't have insurance at present.
    I appreciate the information. I'm trying everything else first, but as a last resort, I'll start the Elmiron.

    Leave a comment:

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