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My first thread: DX;:in Nov.2011

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  • My first thread: DX;:in Nov.2011

    Hi,
    I'm really glad to have the support from the ic-network. I can't believe there are so many out there with I.C. The first time I read some of the posts I cried. I began having symtoms a year ago january 2010.
    After several urine spec. without bacteria found I began to research on the internet and ask my G.P. about it,. So he sent me to a URO. who did a cysto- with hydrodilation and that's when I was DX'd. I was started on Utria-C and I felt it helped somewhat and also trying to adjust to the IC diet. Then of course, the drug was pulled off the market. So, I was offered another med. that's $400.00 a month which I can't afford.
    I have a list of DX's depression, fibromyalgia, HTN, osteoartheritis with alot of back and joint pain. So, adding a new DX. (IC) so far little has helped except my pain meds. and the diet. The best thing was pyridium but you can only take this 2 days in a row or risk anemia. The worst thing for me is the sleep depravation and having to self-cath when I'm having bladder spasms.

    Hope for a new good med.
    Lizzie_71 ,

  • #2
    Are the caths doing you any good? If not maybe the Uro should give you a rescue or other treatments.
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    • #3
      I will start by giving you another welcome as well. I am a male, by the way. I was still diagnosed with IC back in 1997.(while it was still being called a womans disease)Of course, none of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I can state you were not diagnosed November 2011 as you did state. I must figure you were offered Elmiron. Anyhow, many people with IC do end up getting better and being able to do some things that they could not do or either do as good. (or eat some of the "no" items) I have got the heating pad on my back right now. Oh! I deal with degenerative disc disease as well. I can't do all I want to do. I am supposed to be having a sleep study because of all the tiredness, but I have not heard back yet. I use to have much sleep deprivation, but I do get proper number hours of sleep most nights by now.(whether or not I feel like it) I guess I did get up twice during my last sleep, but I got back to sleep easily enough.(sometimes no getting up once I actually get to sleep)OK. You should get other replies as well.

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      • #4
        Hi Lizzie, welcome to the group!

        It's a shame how much some of these meds cost! My doctor had me on Elmiron but eventually I had to give it up due to it's ever rising cost. (I think it was $329.00 a month when I began and within two years it had increased by another hundred-some dollars. Ouch!) I tried CystoProtek and along with diet & a few lifestyle changes, that seems to be working well for me.

        I hope you find something that works for you too. Most of us do find something, but it can take a bit of trial & error before getting there. Don't give up!

        Vicki
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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        • #5
          vickieB-cystoprotek

          Thanks, vickieb,
          I'll ask my Uro. about this med. What did you mean about lifestyle changes like maybe excercise and the IC diet.?
          Sorry, I'm having some trouble navigating thru the sites. I didn't mean to be so lagging in responding to your thread.
          Lizzie_71

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