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  • ICNDonna
    replied
    This is the first I have heard that elmiron isn't readily available. I know many pharmacies don't stock it, but most can get it.

    Donna

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  • beckster
    replied
    Need help and do not trust doctors!

    I am unfortuantely unable to receive disablility, i am still working and on so many pills i am drugged half of the time. I was using Elmiron however the patent expired so i am unable to find it. Do you know if another company has taken it over? My major problem is that without the medicine my bladder bleeds and i'm in so much pain i can not move. I also have a hunners ulcer and my doctor informed me that it is very dangerous and that it could leak causing my body to be poisened and well you know what happens then. I am really needing assitance or advise. I just stated taking cystro pak and found that i am having issues with constipation and alot of pain around my bladder, it does advise that it will take upto 6 months to find releif if any. Can anyone help me out with where to go.... Thank you.

    Originally posted by Candysheart View Post
    Looking for help with elmeron. If you are on disability SSA and are eligible for medicare they have COVERAGES A, B , AND NOW D. D is a RX coverage, its not that costly depending on what insurance company you get. I chose RXamerica and they cover Elmeron, but only because the doctor appealed thier rejection of payment. He told them my diagnosis and why elmeron was needed and they gave a special treatment autherization. I do pay a co-pay of only $3. And a $1 for all meds that are not on a special treatment aurtherization. I pay my monthy insurance premium. I think its somewhere around $50 monthly. For all meds after $4.000 out of pocket meds covered or not, they call it catistrophic and you pay nothing for the rest of the year. including the $50 premium is dropped for the rest of the year. IC is a expensive thing to have so you can rack up $4,000 fairly fast. by summer I will not pay a penney for all coverd meds.and no premium.

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  • Candysheart
    replied
    privte messages

    If you look up on the right hand side of the page where it says welcome click private messages.

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  • ucarpent
    replied
    private

    how do you do private message

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  • Candysheart
    replied
    Looking for help with elmeron. If you are on disability SSA and are eligible for medicare they have COVERAGES A, B , AND NOW D. D is a RX coverage, its not that costly depending on what insurance company you get. I chose RXamerica and they cover Elmeron, but only because the doctor appealed thier rejection of payment. He told them my diagnosis and why elmeron was needed and they gave a special treatment autherization. I do pay a co-pay of only $3. And a $1 for all meds that are not on a special treatment aurtherization. I pay my monthy insurance premium. I think its somewhere around $50 monthly. For all meds after $4.000 out of pocket meds covered or not, they call it catistrophic and you pay nothing for the rest of the year. including the $50 premium is dropped for the rest of the year. IC is a expensive thing to have so you can rack up $4,000 fairly fast. by summer I will not pay a penney for all coverd meds.and no premium.

    Leave a comment:


  • Candysheart
    replied
    UCARPENT,
    I am responding to your post. You asked about cathing 4x's. Let me correct my statement. I cath 4x's for my treatments, however I have an Atonic bladder (dead), so I have to cath, every time I have to empty my bladder. Since I have a very low capacity bladder I have to cath up to 24 times a day. I have to cath every 1-2 hours in a 24 hour period. I get up all night every 1-2 hours as well as day time. First It was not hard at all, now Its hard because its getting OLD. I had a folly cath with a drainage bag for 2-3 years before I found a doctor who treats IC and Atonic bladders with nerve damage. So yes More then 4x's and for Intament moments are extra treatments in addition to the 4. Some times I Just sit and cry. I am very bitter because mine is not due to natural causes. If your intersteded in more, let me know, I feel more comfortable telling in private message. The doctor just changed my cocktail to increase the lidocaine, because the numbness was not lasting long enough and the cathing was getting to me. It still will not change the amount of times numbness just lasts longer. Oh yea, I have to use Lidocaine jelly to put on the lofic to numb the uritha to keep the irritation down. Yes its a big WOW..'The cathing and folley has been part of my life since 2003. prior to that I had mid 2002 I had to rock back and forth to try to drain.
    Last edited by Candysheart; 02-28-2010, 10:25 PM. Reason: miss-spelled

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  • ucarpent
    replied
    to candysheart

    RE: candysheart
    are u saying you insert the cath yourself up to 4x a day and fill the bladder without problems -wow ; how do you do that? and what was that like the first time you did it?

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  • Candysheart
    replied
    Bladder installations

    I take a lot or oral meds, However I find the most success I have is with the medicinal cocktails installed into my bladder works well and its a 10 min time to start working. Once your flare is under control you can reduce the times a day you install. I install 4 times a day when at peak of flare. 2 times a day when I am not in a flare. It prevents flares and when in a flare it tames it in as little as 10 min. It has lidocaine which numbs your bladder so you dont feel the pain, sodium bicarbonate to nutralize the acid, and heprin to prevent blood clots in your bladder which helps to prevent spasms because your not trying to pass blood clots through your uritha. Yes I do take a whole host of oral meds but I swear by the intallations. Try discussing this with your urologist. I even have the amounts of each to make the cocktail if interested.

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  • beckster
    replied
    so tired....

    I reviewed the website http://www.needymeds.org/ and i qualify however they do not carry the medicines that i need. This is a great site for others i strongly suggest that others in need of help with medicine review this site. As for me i will keep praying.....

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  • Cassaundra
    replied
    Try Needymeds.org?

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  • beckster
    replied
    i went to the suggested website for assistance with purchasing Elmiron however i was on Jannssen ortho patient assistance and Johnson & Johnson but because Elmiron's patent expired they will no longer assist with the medicine. ahhhh any other suggetions?

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  • beckster
    replied
    i am having the same problem, my doctor has me on 3 different pills just to replace Elmiron! God help us....

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  • peace_thru_unity
    replied
    Thanks. I have tried EVERY possible assistance program listed at http://www.access2wellness.com -- none of them accept people with our circumstances. My husband's boss switched to this awful, non-credible health insurance, and we can't afford the co-pay for Elmiron.

    I can't find any program that will help me.

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  • lorraine22
    replied
    drug-assistance program to help with elmiron!!

    drug-assistance program to help with elmiron. Here is the website http://www.access2wellness.com. I hope this help you!!

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  • peace_thru_unity
    replied
    I'm not finding a single program to help me with Elmiron!!

    I called the manufacturer of Elmiron, and was told that there are many drug-assistance programs that will help me with the cost of the drug.

    I reviewed every drug-assistance program that I could find on the Internet -- and I telephoned the ones with posted phone numbers...

    NOT ONE PROGRAM lists Elmiron in their drug lists.

    I've talked to every hospital in my area, and the State drug-assistance program, and found NOTHING.

    I am about to use the last of my Elmiron, and I do not want to go back to that awful pain and disability.

    Leave a comment:

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