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Cidofovir Instillation dramatically improved IC symptoms in ulcerative IC patients

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  • Cidofovir Instillation dramatically improved IC symptoms in ulcerative IC patients

    Resent research has found evidence of a polyomavirus has been associated IC patients:

    A Case Control Study Reveals that Polyomaviruria Is Significantly Associated with Interstitial Cystitis and Vesical Ulceration
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556646/


    In keeping with this, a study which used an antiviral named Cidofovir was instilled in patients. Not only was nocturia reduced, but the results were sustained for 8 months after just 3 instillations with Cidofovir. Here I provide a link to the study, and, next an important quote from it:

    Decreased Viral Load and Symptoms of Polyomavirus-Associated Chronic Interstitial Cystitis after Intravesical Cidofovir Treatment
    Damon P. Eisen Ian R. Fraser Linda M. Sung Moira Finlay Scott Bowden Helen O'Connell
    Clinical Infectious Diseases, Volume 48, Issue 9, 1 May 2009, Pages e86–e88, https://doi.org/10.1086/597827

    Link: https://academic.oup.com/cid/article/48/9/e86/412161e

    Here's a quote from the study to show it's level of success
    A trial of intravesical cidofovir (375 mg weekly) was begun 5 weeks after the cessation of leflunomide treatment, because the IC symptoms continued unabated. With intravesical cidofovir treatment, there was considerable improvement in the symptoms. After 2 doses of cidofovir, the patient had decreased frequency of nocturia and was able to void every 2.5 h. This improvement was sustained for 8 months after the third dose of cidofovir.

  • #2
    Re: Cidofovir Instillation dramatically improved IC symptoms in ulcerative IC patient

    Thank you, akh.

    Donna
    Stay safe


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    • #3
      Re: Cidofovir Instillation dramatically improved IC symptoms in ulcerative IC patient

      One thing to be aware of is that the antiviral drug they used is nephrotoxic.
      It can damage the kidneys.
      So it is definitely not for everyone and they usually provide a medicine to protect the kidneys when they use it orally.
      Not sure what it does when its right in the bladder like that.
      Just something to be aware of.
      Heres a guideline they use in new zealand when they use this medicine, its good to know for anyone using it.
      https://www.starship.org.nz/media/24...l_may_2013.pdf
      Last edited by stef000; 04-29-2018, 01:59 PM.
      Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
      Hysterectomy/oophorectomy 2014 endo had destroyed everything
      Now dealing with recurrence and menopause in late 30s
      Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

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      • #4
        Re: Cidofovir Instillation dramatically improved IC symptoms in ulcerative IC patient

        This is such an incredibly important discussion because we now have three distinct viruses tht we now know can influence the bladder wall... the most recent being the Epstein Barr Virus, in addition to the Polyoma BK and Herpes Simplex.

        I've been waiting for studies like this that explores the role of antivirus therapy. And, ironically, I just sent out an email to our medical board early this morning about the role of viral infections!!

        That said, the nephrotoxicity is definitely a concern. I'll try to keep you posted on what our board says!

        Jill
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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        • #5
          Re: Cidofovir Instillation dramatically improved IC symptoms in ulcerative IC patient

          But it isn't to say the other antiviral agents out there and the ones to come that are less damaging to the system, can't be used.
          Just figured to mention the kidney damage risk with that one in case someone goes out and gets it done and not realize what you need to do to lessen that risk.
          I had read that there was a new antiviral agent in the works or all ready out there that is similar but not damaging at all to the system.
          Very interesting stuff though.
          Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
          Hysterectomy/oophorectomy 2014 endo had destroyed everything
          Now dealing with recurrence and menopause in late 30s
          Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)

          Comment

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