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  • hello

    I live in Maryland and hope to speak with as many people as possible esp. men and their stories and therapy?

    Over the past several years I noticed that I was starting to urinate more at nigh actually waking me up. After 2-3 years I decided to go to URO to get checked out. After that examination I have never felt the same, I have had ups and downs.

    Tried the antibiotic route: 2 months of Cipro and Tetracycline. It seem to work at times but overall it ultimately didn't.

    I had a Cysto and a moderate narrowing was found and thought to be the cause of the urination. I went on Cardura and had 3 months of no problems.

    Then I had a reoccurence about a month and a half ago, decided to have a hydrodistention and there were small hemorages in the bladder so my Uro gave me the news I/C

    Post URO I thought I had a plan, use the therapy gained by distention for a few months until Elmiron starts to kick in. Well post operative euphoria was there and i felt great but 1 week later I found mysef in a flare.

    I have heard and read alot of advice from Dr's

    I hear to take 600Mg of Elmiron (Re-line bladder) instead of the traditional 300MG. Take Atarax (Anti Inflamatory) before bed, and perhaps Poly Citra K to alkinalize urine. The strict diet aviding acids goes without saying.

    How do you IC's feel about Elavil, given that I'm a finance guy that needs maxim brain efficiency?

    How does anyone feel about suppliments such as Prelief, Tens, and Alganot?

    I also would like to know what are the normal meds IC's are on and what doses if you would be willing to offer that up?

    What can I expect as far a flares if I stay on diet and stay true to meds... Can I function normally? I know everyone is different but I'm just polling here to find duration and frequency of flares. I'm more than willing to share any intimate details of my experience with anyone since I know how hard this can be!!!!

    I'mlucky to be near University of Maaryland where I can see one of the top I/C teams, I have an appt next month and hope to glen some understanding of the new proteins they found in urine of IC patients I will update when I get some info...

    PS I'm flarring now wanting to be normal again

  • #2
    analysis of my IC took six years and the fourth urologist. took DMSO instillations, 4x25 elavil
    green dye,at night,and 300 Elmiron, 100 at night. DMSO has been replaced with
    L-Arginine 500 mg, at night. Attention to diet is critical for me. Dehydration is a staple with a busy schedule or long meetings.
    Hydrate in the evening, disregarding the frequency. Starting to use Prelief.

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    • #3
      Hey hun and welcome. Currently I'm on Elmiron, Elavil, Amtryptiline, and Ditropan XL daily. I take Pyridium and Macrobid as well as pain meds as needed in addition to DMSO treatments every two weeks. I enjoy the Prelief because it helps me to enjoy a few things that I am not supposed to have with the IC diet. Although it won't stop my HUGE reaction to the spaghetti that I miss oh-so much. It does help with having ketchup with my french fries and drinking a soda with lunch. As far as my doc goes, I more enjoy her company than anything else... hehe She's really cool and we always have stuff to talk about since I'm pretty much on a first name basis with everyone at my doctor's office. I mean, I do go there enough... I do realize that I'm not a man and all, but I'm more than happy to answer any questions you might have, or chat about anything if you'd like. You're welcome to PM me, or add me to your MSN messenger if you have it. Good luck and keep me posted!! ~mel~
      Life is just a cycle of brilliance and blues. I can't help it if I'm stuck in brilliance.. hehe

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      • #4
        hi grouphug
        "Life is 10% what happens to you and 90% how you react to it"

        Read my story at: http://www.ic-network.com/patientstories/melissa.html

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        • #5
          It took me 6 months to get dx'ed. I'm on Elmiron and Elavil. I can do pretty good with just Elmiron. Have been taking the Elavil to humor my Uro. I really haven't "felt" that it works for me.
          Hope the flare ends soon for you..
          Tons of support,
          Jaime

          IC angel helping families in need for the holidays. [email protected]

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          • #6
            Hi there & WELCOLME!!
            grouphug kissing grouphug angel

            Best of luck.
            Take care.Love, Zookeeper Kim
            Animals are very comforting when
            pain & life gets you down...

            Keep your head held high and don't let any thing bring you down.

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            • #7
              Welcome to the family!

              [email protected]
              Sue C.~
              [email protected]

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              • #8
                Hello and welcome to the boards! There is a lot of support here. I hope that you find a treatment that is successful for you and the elmiron helps you.
                christine.

                Newbie Angel- Giving support to those new to the boards with IC

                Angel over the airways- Lets get the word out on IC!

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