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sandy1020

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  • #1

    sandy1020

    I have been on elmiron for 4 mo. and it has'nt helped yet. My dr. said after 6mo. he would take me off the med and assume it's not IC.But on alot of the threads I read people are on it for yrs. Why would he take me off? PLEASE someonePLEASE respond to this question. Can IC cause horriffic pain that feels like acid in an open sore just on the right side of my bladder?????
    1966-ureteteral reflux repair
    1991-Migraines:Torradol IM
    1999-Partial Hyst-Premarin
    2000-rectocele/cystocele repair
    UTI's-too many to count since childhood
    5 normal vag deliveries and 5 beautiful kids/2grandkids so I need to feel better:woohoo:
    Tags: None
  • #2
    I am new to this, but it is possible you have IC. I have heard that it can take anywhere up to a year for Elmiron to kick in. I have also heard you can do rescue instillations while you are waiting for the Elmiron to start working. Do you know if your dr specializes in IC?
    Diagnosed with IC - March 2007
    Diagnosed with vulvodynia - June 2007
    -Lots of prayer
    -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
    -Taking Prelief as needed (stopped because of pregnancy)
    -IC diet

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    • #3
      update

      Don't know how i forgot all the rest of my meds
      Elmiron 100mg 3xday
      Hydrocodone 7.5/325 every 4 hrs.
      Zanaflex-TMJ
      Ativan 2mg-insomnia
      Macrobid 100mg once per day for prevention of UTI's
      ToprolXL 100mg once a day Mitral valve prolapse
      Lyrica 75mg twice dly for pain (not sure it works)
      sandy1020
      sandy1020
      IC Friend
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      Last edited by sandy1020; 06-18-2007, 04:37 PM. Reason: forgot dx fo med

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      • #4
        Hi Sandy - The IC specialist that I saw 2 months ago told me that Elmiron does not help everyone with IC. From what I have heard and read, it is possible to have IC but not respond to Elmiron. Elmiron only works for about 40 percent (or so) of folks with IC. Maybe you could ask your doctor why he would assume that you don't have IC. I hope that you will be feeling better soon. I think that it is wonderful that you have raised 5 beautiful children and that you want to help with your grandchildren. My children are still young teens, but when I was diagnosed with IC a few months ago one of my biggest worries was that I might not be healthy enough to help with my grandchildren some day. I am feeling a bit better now and I am determined to be around for my future grandchildren. I hope that you will be feeling better soon. I am keeping you in my thoughts...Linda
        Sudden onset of UTI like symtoms on Dec 27, 2006.
        Diagnosed with IC on March 12, 2007.
        Current Meds: 50mg Elavil
        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

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        • #5
          Oh, lan is SO right - if someone does not respond to Elmiron it does NOT mean that person doesn't have IC. Not at all! Not everyone with IC is helped by Elmiron - not by a longshot.

          Maybe he meant if it wasn't helping by 6 months he'd try something else? I hope that's what he meant and not that he felt that would mean you don't have IC. Elmiron is not a cure all for IC at all.
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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          • #6
            Sandy, I see a Urologist Surgeon/ IC Specialist in Houston. He told me that it takes 6mo to a year to even start to know if Elmiron is working or not.....I think for me I didn't feel any difference till 9 months.....and now at 12 mo I'm doing really well. I also use Freeze Dried Aloe Vera....and have for 3 yrs. I hardly have any IC pain now.....and I'm thrilled! Remember you are rebuilding the lining......while you continue to eat food....that continues to irritate it..so it takes a while.....a long while to get that lining rebuilt. Is your dr. just a Urologist? IF so, maybe you need to find an IC specialist?? Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment

            • #7
              When the trials were done before elmiron was approved by the FDA, the number of IC patients who were helped was only 38% --- so if it doesn't do anything, it absolutely does not mean you don't have IC.

              Warm hugs,
              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.               [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

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              • #8
                I've been on Elmiron for almost 8 months and I haven't seen any improvement from it that I'm aware of. My IC was confirmed w/ a biopsy during a hydro/cysto. I'm actually going to my uro later on this morning and plan on asking him if it is worth staying on the Elmiron when I don't feel that it's helping and it's so darn expensive.
                Christine



                I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                I have tried every oral medication as well as rescue instills and DMSO.

                I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                Also proud mom to the best Bullmastiff on earth, Claus

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