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2010 Guidelines for IC are more conservative now - Please read

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  • 2010 Guidelines for IC are more conservative now - Please read

    Hi, I actually saw this on ichelp.org but this is good to see as some doctors refuse to treat until a cysto with hydro is done (no matter what level of symptoms you have). This calls for more conservative approaches. I feel lucky my doctor seems to be following this protocol. I also love the last sentence as I know so many of you have doctors who won't help with pain management.


    "The American Urological Association (AUA) announced the release of preliminary IC guidelines at the AUA 2010 annual meeting. On behalf of the AUA's IC guidelines committee, Phil Hanno, MD, presented the first-ever guidelines for diagnosis and treatment from the association. These guidelines do not support using the potassium sensitivity test as a valid one for IC, nor do they support cystoscopy with hydrodistention under anesthesia for "uncomplicated" cases, that is, cases that are not severe and don't have many accompanying conditions. The guidelines emphasize conservative, noninvasive approaches to start, for example, an IC-friendly diet, physical therapy aimed at pelvic floor dysfunction, and stress management. Therapies called first-line treatments include the oral medicines amitriptyline, histamine blockers such as hydroxyzine (Atarax, Vistaril) or cimetidine (Tagamet), pentosan polysulfate (Elmiron) and bladder instillation therapy. Treatment recommends then step up through five levels-no matter what level, the guidelines emphasize the importance of pain management."

    There is more to it, here is the link: http://www.ichelp.org/Page.aspx?pid=429 there are some informative videos here too.
    Last edited by cmclien; 02-21-2011, 05:05 AM.
    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

  • #2
    I watched all three videos and liked what he had to say about "pain" and really what he had to say in general.
    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

    Comment


    • #3
      I hope this is a good thing! I had what I now call 'mild' IC five years ago, and I tried Vesicare and Elmiron, Prelief and Urocit-K without much luck. Then my urologist gave me a hydrodistention/cystoscopy/instill with capsaicin and somehow I got a five year remission out of that! I'm afraid that under the new protocol, that same doctor would just make me try more and more drugs (that can cost a fortune and have disabling side effects!) since my case probably looked relatively uncomplicated. I feel like I'm going through the same thing right now- all I want are 'rescue' instillations (which I know are listed under 'first-line therapy,' good!), but the doctors here in Spain would rather string me along for weeks, having me pay out of pocket for a pharmacy of meds (some which I found out are dangerous taken together!) that make me feel sicker instead of scheduling me for any procedures...But I should probably go watch the videos and educate myself some more about the 2010 Guidelines...thanks for posting!
      IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
      Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
      Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

      Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
      Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
      Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
      Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

      Comment


      • #4
        If you were helped by the hydrostention previously I would hope that you wouldn't be denied that as a treatment. I know it does work for many and my Dr says that if it helps, he will do it as often as needed. Within reason, I am sure! You might make a trip to the states to have one and hope for remission again. Are you still in touch with your previous Dr?
        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

        Comment

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