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  • New Diagnostic tool?

    Hi all,
    Its been a long time since I've posted here, but I thought I'd stop by and tell you all about the good news I heard today from my urologist. (I'm not sure where exactly to post this, so I ended up here!)

    My uro (Kaufman in NYC) just got back from some IC conference where he said some researchers finished a study that was able to identify a defective protein in IC patients urine that was not present in non-IC patients urine. He is currently getting ready to start a second study to try and prove this... but he was pretty excited. It would be so great if they could use this as a new (easy! painless!) way to diagnose IC, as well as figure out the cause and come up with new and better treatments.

    pretty cool, huh? :woohoo: :woohoo:
    Barbara

  • #2
    That's great! Thanks for sharing this! I'm guessing he's doing a second study based on Dr. Susan Keay's work where she discovered the "Anti-proliferative Factor, or APF." It is a toxic protein produced in the bladders of IC patients, that is not found in non-IC patients. There is great hope for this to become a chemical marker for IC, and perhaps for this to become a gateway to an effective treatment for IC.

    Blessings,
    Lori

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    • #3
      :woohoo: :woohoo: :woohoo: :woohoo:

      This is great! My only regret is that they didn't prove it before the cystoscopy from hell. At least others down the road wont have to deal with it. I think this will also help get others diagnosed, since doctors tend to underdiagnose us.

      Erika
      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control

      Comment


      • #4
        That is great! My uro put me out for my cyto....so it wasn't too bad, I did flare for the first couple of weeks after though.

        Comment


        • #5
          Originally posted by ICLori View Post
          I'm guessing he's doing a second study based on Dr. Susan Keay's work where she discovered the "Anti-proliferative Factor, or APF."
          Hi ICLori & everyone,
          I just asked my doctor and he said no, that this was new research showing something very new and that the APF research has been going on for a few years.
          Its actually good to know that there are these mutliple possible "solutions" to this problem, and lets hope one of them pans out soon!!

          I never did a cysto--but I had to have a potassium test, which was painful, and it was 15 years after I first got IC symptoms. It sure would be nice to have an easy foolproof test that people could get right away. and maybe some new treatments!

          Cheers,
          Barbara

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          • #6
            Quick fixes and ongoing research

            Be very careful about "new" research and quick fixes. Sometimes Drs are paid by research facilities and drug companies. I hope you feel better.

            Comment


            • #7
              APF was discovered very recently. August of 2005 if I remember right. But yes, this is great news! Hopefully there will come a day when IC can be identified through a painless urine sample that doesn't require invasive procedures that involve inflating your bladder with fluid or gas. Or the awful PST which is painful---so I hear. I personally had the joy of a cysto/hydro---which I will NEVER EVER do again. Not in this life or the next, or any other.

              Plus, identifying APF itself is the first step to identifying the gene responsible in IC patients for making APF. If we could turn this gene off and stop APF from being produced in the first place, there's a chance our IC could be cured or our symptoms greatly reduced if it turns out that this APF is truly responsible for destroying our bladder lining.
              Lee Ann
              Current Rx Meds:
              Atarax, Ditropan, Elmiron
              Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
              Hooray for babies!
              Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
              Didn't work for me:
              Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
              IC (Mod-Severe) since 1996

              UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


              My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

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              • #8
                participating in studies, etc.

                I am happy to hear that markers, etc. have been discovered. All I am saying is that unfortunately, studies, doctors and drug companies all work hand-in-hand to make money. They require subjects to study. I am not convinced that being a "subject" is helpful. I have been on elmiron for over five years and am now weaning myself off it on my own, with no help from my doctor. I was a sufferer of ic for over twenty years. I went to the top names in this field. One of whom told me I didn't have IC, without doing a dilation. Another also refused to give a dilation and told me I was neurotic. However, I finally insisted and heard his shock when he found the ulcers. I will not mention names. Yes the elmiron helped, but what really helped is that I went through menopause. Have studies been conducted on the hormonal connection? I haven't heard of any postmenopausal studies on whether IC ceases at that time on its own. :woohoo:

                Comment


                • #9
                  It's true that some doctors and some drug companies work together. But that's not always a bad thing. It can be a bad thing if these partnerships are forged out of greed. Sometimes doctors are given kickbacks from pharmaceutical companies for prescribing certain meds (which I don't agree with) but I think there are plenty of noble doctors and pharmaceutical companies and pharm reps out there who do the right thing and consider a patient's health as their number one priority. Medicine is a business, I'm not naive, but I work in the medical field and I'm always making decisions about cost effectiveness vs. best practice. I always make decisions that I think are in the best interest of a patient and I truly feel the same is for all of the men and women I have ever worked with.
                  Lee Ann
                  Current Rx Meds:
                  Atarax, Ditropan, Elmiron
                  Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                  Hooray for babies!
                  Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                  Didn't work for me:
                  Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                  IC (Mod-Severe) since 1996

                  UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                  My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

                  Comment


                  • #10
                    I don't think there's much doubt hormones do effect IC. Unfortunately, it's a little more complex than that and we don't have the answers as yet, though there are researchers looking into that aspect.

                    I am glad menopause has had such a positive impact on your IC. I had the opposite experience. I went through a very premature menopause (started at 35). I was on hormone replacement therapy for many years and did just fine. I had absolutely no bladder problems through my life. At age 55 I suddenly stopped hormone replacement therapy because of the warnings about it that were announced at that time. Less than a year later I very suddenly developed IC. I was many years post-menopausal when this happened. I have no doubt (in my case) the sudden lack of estrogen played a role in my DEVELOPING IC. We do know in women estrogen does play a role in maintaining healthy bladder and urethral tissue.

                    What a tangled web IC is. I am so VERY thankful we have more and more dedicated researchers striving to untangle this mystery. Great strides are being made in research now. It is this work that gives me hope IC WILL be understood and resolved so future generations won't have to suffer as those with IC do now.
                    Last edited by Annie2; 08-09-2007, 04:02 PM.
                    Annie

                    IC
                    Ulcerative Colitis and IBS
                    Pelvic Floor Dysfunction

                    _________________________________________________________
                    Retirement is great! Work is highly overrated!!!
                    ---My dear hubby

                    ________________________________________________________
                    Never go to a doctor whose office plants are dead.
                    ---Unknown

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