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elmiron dosage from 3 to 5 pills

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  • #1

    elmiron dosage from 3 to 5 pills

    has anyone heard of taking 5 pills a day instead of 3? my ic isn't under control, and the nurse brought up this idea. i'm worried that it will bother my GI system even more than it already does, and of course the cost. anyway, i was just wondering if anyone had upped their dosage and seen a difference in symptoms.
    take care,
    kit
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  • #2
    My urologist actually prescribed me 900mgs per day (3 pills, 3x day), which seems to be fine with my system thus far (though not doing much for the ic yet). She isn't a big believer in the effectiveness of elmiron, but said that if I wanted to try it I should be on a higher dosage than the generally prescribed 300mgs.

    Addy
    Addy

    Symptom onset: 9/2010
    Diagnosed: 11/2010 via urodynamics, voiding diary and symptoms

    Current Treatments:
    Botox to bladder trigone (not going well at the moment - retention issues with minimal to no symtomatic relief as of yet)
    Biofeedback
    IC Diet + gluten free
    Physical Therapy (since January 2011)
    Valium suppositories
    Xanax

    Tried & failed: tricyclics (severe retention), atarax (retention), gabapentin, Cymbalta, Lyrica, Trileptal, Topomax, Lamictal, Keppra, Vicodin, Methadone, hydrodistention (waited over a year before willing to try this), elimiron/lido/sb instills, Whitmore cocktail instills, Uracyst instills, PTNS, acupuncture, electroacupuncture, low-dose naltrexone, nerve blocks (impar ganglion, superior hypogastric plexus, left sided S2-S4, caudal), Botox to pelvic floor

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    • #3
      Doctors are funny (not)....mine said the opposite. He has me on 100mg 2x/day because he said less is more and taking more isn't necessarily better. He didn't expand why other then his patients had alot of success with that dosage and stayed on it longer due to less side effects.
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

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      • #4
        I take 400mg a day and have for quite a while. There are other's on the board that take 400mg a day as well.
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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        • #5
          I'm on 500mg 200 in am and 300 in pm. I think it has helped. I did loose hair in the beginning. Quite a bit actually but that has stopped.

          Suzanne

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          • #6
            I went from the normal 300mg to 600mg daily. Really didn't notice the difference but the doctor said at this time that my IC is really bad, worse case he has ever treated.
            As to the cost wise, if you have (good) insurance it shouldn't matter with the cost - the price for mine is the same no matter how much.

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