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  • IC Symptom Score

    Found this on International Painful Bladder Foundation website -- hope it isn't already on the site somewhere, I couldn't find it.

    A preview copy of the Pfizer Bladder Pain/ Interstitial Cystitis Symptom Score (BPIC-SS) can be seen on the
    ESSIC website: Click here for a preview copy - http://www.essic.eu/pdf/2010%20BPIC-...iew%20copy.pdf

    This symptom score is intended as a short screening tool
    which might aid identification of IC/BPS patients for inclusion in trials.
    ______
    Severe IC developed fairly quickly, autumn 2010.
    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
    - Methadone 9 ml/day
    - Instillations:
    - 40ml Kenalog (steroid for inflammation) 2 x per
    week, along with rescue cocktail of heparin,
    lidocaine, sodium bicarbonate
    - 20ml Uracyst, monthly @ $100/per
    - Depo lupron injections for endometriosis, monthly @ $88/per

  • #2
    Thats nice to see. I wonder if there is a scoring key somewhere?
    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
      Many Dr's use what is called the PUF test. It is very similar, I had to fill one out when I was first getting diagnosed. It asked questions and depending on what your score was it would give your Dr an idea of the probability of you having IC.

      There is also an IC symptom screener on the Elmiron website. It will give you the results of your probability immediately.

      Sandra

      You can find a copy of the PUF questionarre here:

      www.drlowellparsons.org
      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


      • #4
        Scoring scale

        This page has Parsons' scoring key:
        http://www.drlowellparsons.org/wst_page2.html
        ______
        Severe IC developed fairly quickly, autumn 2010.
        So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

        - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
        - Methadone 9 ml/day
        - Instillations:
        - 40ml Kenalog (steroid for inflammation) 2 x per
        week, along with rescue cocktail of heparin,
        lidocaine, sodium bicarbonate
        - 20ml Uracyst, monthly @ $100/per
        - Depo lupron injections for endometriosis, monthly @ $88/per

        Comment


        • #5
          LOL I was just gonna say i filled out something similar to that when I saw dr. Parsons.....but it was like 10 pages long...he does a really thorough history.

          Comment


          • #6
            ICSI: Scoring interstitial cystitis > 8

            The ICSI is O'Leary-Sant Interstitial Cystitis Symptom Index - the 'measuring' scale for interstitial cystitis that seems to be referred to in the inclusion criteria for some (often quite a number of) IC clinical trials.

            I attach it here - it's the left column, ICSI, as opposed to ICPI which is the right column.
            ICSIandICPI.pdf

            '8' seems to be the magic number they often refer to, eg.:

            'Must have a total score of 8 or greater on the O'Leary-Sant Interstitial Cystitis Symptom Index (ICSI) and a score of > 0 on each of the 4 questions on the ICSI'.

            ICSI seems pretty weak to me, in terms of science. It seems to exclude a lot of IC patients (like me - disclosure!) ... it results in a conclusion that we don't have IC, yet we've been told we do have IC - atypical interstitial cystitis.

            Atypical IC, as I've read, presents with ER-level pelvic bladder pain as the primary symptom (for me, it goes along with burning at urethra entrance, pain reduction with urine voiding, etc.. and a bit of frequency as it relates to the pain), but urgency and frequency aren't really significant problems.

            The other weakness of ICSI is that it's also pretty subjective, so that a single-digit difference (saying for example that someone pees three times in the night instead of two times) can result in a determination that they don't have IC & so not getting treatment for it.

            But I haven't come up with a better idea for how to determine if someone has IC, so unless I do, I realize that I can't really complain about the inadequacy of the tests that exist now!
            Last edited by playethic; 03-25-2011, 09:20 PM. Reason: added trials link
            ______
            Severe IC developed fairly quickly, autumn 2010.
            So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

            - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
            - Methadone 9 ml/day
            - Instillations:
            - 40ml Kenalog (steroid for inflammation) 2 x per
            week, along with rescue cocktail of heparin,
            lidocaine, sodium bicarbonate
            - 20ml Uracyst, monthly @ $100/per
            - Depo lupron injections for endometriosis, monthly @ $88/per

            Comment


            • #7
              Typically these "tests" or rather questionnaires are designed to help a Dr determine if IC MIGHT be causing symptoms. I don't think they are intended for use of definitive diagnosis, just a starting point.

              I took a PUF and after I answered the questions I was told that there was a good probability that I had IC, then I had a PST. I wasn't even given this test until I was tested for a lot of other conditions first. I presented with tremendous pain, urgency but not frequency. I think (and this is my personal thought) that depending on what symptoms someone has in the beginning might determine which route a Dr chooses to take in diagnosing someone. Like others that don't have the pain but do have urgency and frequency are sometimes diagnosed with few tests and based on symptoms.

              There are so many ways to test for IC. Are you questioning your diagnosis?

              I am not familiar with the term atypical IC and I seem to have the same symptoms as you, so in that case also, it depends on the Dr.

              Sandra
              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


              • #8
                I think Sandra is right they are a starting point and I also wanted to mention that the tests they use to screen for research studies are not meant to be used for diagnosing IC. I read that they deliberately make a very strict test for these studies leaving out about 75% of people who have moderate and mild IC. I forgot who talked about that, maybe Dr. Parsons but can't remember. They need to have a group of people who are similar in symptoms so they can measure improvements more objectively.
                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


                • #9
                  I find it strange that there is no mention at all about burning. That is a huge symptom for me in addition to pain.
                  treatment:
                  -I follow the IC diet to the letter
                  -acupuncture and chinese herbs
                  -Prelief
                  -UTA
                  -instillations as needed
                  -beginning yoga and specialized yoga for breathing and relaxation
                  -Wellbutrin
                  -Klonopin


                  main symptoms: pain and burning

                  Comment


                  • #10
                    Burning is a big symptom for me too (for me, that's hot hot urine).

                    I came across this blurb too, about other diagnosis scales...

                    • Three published PBS/IC symptom questionnaires:

                    – University of Wisconsin IC Scale,
                    – O'Leary-Sant IC Symptom Index and IC O'Leary-problem Index,
                    – Pelvic Pain and Urgency/Frequency (PUF)
                    Scale.
                    ______
                    Severe IC developed fairly quickly, autumn 2010.
                    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

                    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
                    - Methadone 9 ml/day
                    - Instillations:
                    - 40ml Kenalog (steroid for inflammation) 2 x per
                    week, along with rescue cocktail of heparin,
                    lidocaine, sodium bicarbonate
                    - 20ml Uracyst, monthly @ $100/per
                    - Depo lupron injections for endometriosis, monthly @ $88/per

                    Comment

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