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AUA 2016 Report on CyA- did I read this correctly!?

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  • AUA 2016 Report on CyA- did I read this correctly!?

    Hi All,

    Here is the article I found:

    http://www.urotoday.com/conference-p...-outcomes.html

    Did they say that those With Hunners Ulcers Did not respond? I feel like I've read both sides regarding CyA, we need so much more research and trials on this!!
    Health Issues
    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
    Symptoms:
    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

    Failed
    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

  • #2
    Re: AUA 2016 Report on CyA- did I read this correctly!?

    I have read a lot of these since being diagnosed. Here is what i gathered from reading it. I am not a scientist.


    Aim was to assess effect of drug on patients with IC. Patients used in study had to fail 2 classes of therapy. Patients were treated with Cyclosporine starting at 3 mg/kg divided twice a day and assessed monthly for 3 months to determine therapy. How they measured their symptoms was with the IC GRA assessment. (The assessment asks: “As compared to when you started the study [treatment], how would you rate your interstitial cystitis symptoms now?” The seven point scale is centered at zero (no change): markedly worse; moderately worse; slightly worse; no change; slightly improved; moderately improved; and markedly improved.) Of those who were in the study, 7 patients (27%) had Hunner’s ulcers and 9 patients (34.6%) were on chronic narcotics.

    At the 3 month primary endpoint, 52.4% of patients were improved according to the GRA scale mentioned earlier and 38.1% had over 30% improvement according to the GRA scale. The authors concluded that based on several different parameters Cyclosporine can be effective therapy for patients with longstanding recalcitrant IC who had failed multiple prior treatments. This drug can also be successful in patients on chronic narcotics. Patients with Hunner’s ulcers were unlikely to respond to the drug.

    I wish I knew what they meant by the last two sentences. I feel this could be just coincidental.
    ----
    Diagnosed Nov 14 via hydro with cysto
    --
    Tried and Didn't work:
    -Hydrodistension
    -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
    -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
    -Tried Elmiron
    -Pelvic floor therapy for 2 months Returned this month
    -Interstim Advanced Trial, Pudendal Interstim Trial
    -Gabapentin cream for VV
    - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

    Tried and did work:
    elavil for pain only 25mg a night
    Trying: psychological therapy, doxepin 25mg at night
    Diagnosed:
    PFD, Vulvar vestibulitis, IC

    Comment


    • #3
      Re: AUA 2016 Report on CyA- did I read this correctly!?

      Originally posted by ceera1231 View Post
      I have read a lot of these since being diagnosed. Here is what i gathered from reading it. I am not a scientist.


      Aim was to assess effect of drug on patients with IC. Patients used in study had to fail 2 classes of therapy. Patients were treated with Cyclosporine starting at 3 mg/kg divided twice a day and assessed monthly for 3 months to determine therapy. How they measured their symptoms was with the IC GRA assessment. (The assessment asks: “As compared to when you started the study [treatment], how would you rate your interstitial cystitis symptoms now?” The seven point scale is centered at zero (no change): markedly worse; moderately worse; slightly worse; no change; slightly improved; moderately improved; and markedly improved.) Of those who were in the study, 7 patients (27%) had Hunner’s ulcers and 9 patients (34.6%) were on chronic narcotics.

      At the 3 month primary endpoint, 52.4% of patients were improved according to the GRA scale mentioned earlier and 38.1% had over 30% improvement according to the GRA scale. The authors concluded that based on several different parameters Cyclosporine can be effective therapy for patients with longstanding recalcitrant IC who had failed multiple prior treatments. This drug can also be successful in patients on chronic narcotics. Patients with Hunner’s ulcers were unlikely to respond to the drug.

      I wish I knew what they meant by the last two sentences. I feel this could be just coincidental.
      You're awesome thank you! I got most of it, but I've heard both it helps those with ulcers but then it doesn't. I REALLY wish doctors would do a large trial on this, it sounds like it could really help people who have exhausted all options. I might be trying this soon, I'll update y'all if I do!
      Health Issues
      IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
      Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
      Symptoms:
      I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

      Failed
      Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

      WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
      Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

      Comment


      • #4
        Re: AUA 2016 Report on CyA- did I read this correctly!?

        No problem. I am going to bring it up to my dr too at my next meeting. I am desperate at this point. I have read many people say it helps, but they side effects suck. I could deal with almost any side effect besides cancer or organ damage obviously haha idk what can be worse than this
        ----
        Diagnosed Nov 14 via hydro with cysto
        --
        Tried and Didn't work:
        -Hydrodistension
        -Oxybutinin, Troviaz, Vesicare, Cyrotec, Trumadol, cimedidine, myrbetriq, sancuria, imetidine
        -Tried DMSO instill twice and could not hold it for more than 15 min. Put me in 10/10 pain for days.
        -Tried Elmiron
        -Pelvic floor therapy for 2 months Returned this month
        -Interstim Advanced Trial, Pudendal Interstim Trial
        -Gabapentin cream for VV
        - Botox in the pelvic floor & Bladder, Pudendal Nerve Block

        Tried and did work:
        elavil for pain only 25mg a night
        Trying: psychological therapy, doxepin 25mg at night
        Diagnosed:
        PFD, Vulvar vestibulitis, IC

        Comment


        • #5
          Re: AUA 2016 Report on CyA- did I read this correctly!?

          Originally posted by ceera1231 View Post
          No problem. I am going to bring it up to my dr too at my next meeting. I am desperate at this point. I have read many people say it helps, but they side effects suck. I could deal with almost any side effect besides cancer or organ damage obviously haha idk what can be worse than this
          Lol I feel the same way! anything is better than this! Lol
          Health Issues
          IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
          Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
          Symptoms:
          I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

          Failed
          Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

          WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
          Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

          Comment


          • #6
            Re: AUA 2016 Report on CyA- did I read this correctly!?

            Originally posted by ceera1231 View Post
            No problem. I am going to bring it up to my dr too at my next meeting. I am desperate at this point. I have read many people say it helps, but they side effects suck. I could deal with almost any side effect besides cancer or organ damage obviously haha idk what can be worse than this
            So I got my blood work results, came back ok. So now I have to go to a rheumatologist to have my symptoms assessed because I guess you can diagnose SS based on symptoms and biopsy, I guess negative blood work is common for Sjogrens. I am so freakin annoyed. So I asked my Urologust when I could just try the CyA, waiting on his response. Is nothing ever easy for me!? Only an IC patient would want a positive ANA result! Lol
            Health Issues
            IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
            Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
            Symptoms:
            I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

            Failed
            Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

            WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
            Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

            Comment


            • #7
              Re: AUA 2016 Report on CyA- did I read this correctly!?

              I will be starting cyclosporine within a few weeks. Did any of you try this treatment? Curious to know the outcome - the clinical trials look really positive...
              Maria
              I have had IC since January 2015 and mainly with pain / burning / warm feeling in bladder / discomfort.

              Currently: Elmiron 4x100mg, LDN 4 mg at night, antihistamines

              Tried and didnt work:
              Meds; Uracyst, DMSO, Gabapentin, Cyclosporine A, Amitriptyline, hyperbaric oxygen chamber 40 x sessions, high dose long term antibiotics (8 months)

              Naturals; Colostrum, DH Aloe vera, acupuncture, MSM, Glocosamine, Homoepathic treatment, marshmellow root, chinese herbs, IALURIL, Gotu Kola, D Mannose.

              --

              Please find a cure - so many are suffering

              Comment

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