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AUA 2007 - Cyclosporine Shows Promising Results for IC in Brazil study

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  • AUA 2007 - Cyclosporine Shows Promising Results for IC in Brazil study

    Researcher Jamil Chade & colleagues (Brazil) shared their experience using Cyclosporine A as a treatment for IC. They enrolled 36 patients in their study, who received 1.5 mg/kg of cyclosporine A, twice a day, for 12 months. The patients were re-evaluated for the symptoms (ICSI) and by urodynamics at 6 and 12 months of treatment.

    The results showed a decrease in IC symptoms, as well as an increase in bladder capacity. All the patients had biochemical analysis before and after the treatment, and no abnormalities were found for liver and renal function.

    The authors concluded "Considering the treatment of IC, cyclosporine A represents a new alternative. The good tolerance, safety, and promising results recommend the use of cyclosporine A for the treatment of IC."

    --------------

    Source: AUA Abstract [121] EVALUATION OF SYMPTOMS IN PATIENTS WITH INTERSTITIAL CYSTITIS TREATED WITH CYCLOSPORINE A

    Jamil Chade, MD, Antonio M Lucon, MD, Daher C Chade, MD, Miguel Srougi, MD, PhD. University of São Paulo, São Paulo, Brazil
    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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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    I had my Hydro today and when she came back to see me before procedure, she had gotten back from conference and spoke of this new study and said she is going to do more research on it for me.

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    • #3
      Jill,
      This is good news. Thanks for sharing it!
      mom_in_ma

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      • #4
        Jill,
        Is there any way to find the full study? I'd like to know more about this one. There was a similar study in 2005 that found cyclosporine A was significantly more affective than elmiron. I'm convinced that my IC is autoimmune in nature and would like to talk to my doctor about this.
        mom_in_ma

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        • #5
          Jill this stuff really scares me because of what Lori and some of the others went through with it. But I also think maybe it is like all other drugs, some will be able to do good on it and some won't do good. Maybe it will be a good thing if you have a doctor that will keep an eye on you and making sure that it is not working against you. Having a good doctor I think is the key when you are taking this any kind of medicine. That would be great if this thoes help a lot IC'ERS.

          Sending hugs, Trishann

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          • #6
            Finding this study -

            Go to the website: http://www.aua2007.org
            Click on Abstracts
            Click on Search Abstracts
            Register with your email address and select a password
            Then just do a keyword search for Interstitial Cystitis or by the researcher name

            That's from memory... but it should get you there!

            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/

            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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            • #7
              OK. Excuse me for sounding ignorant, but is Cyclosporine A availble to use now in California? Thanks for the reply. Mr. Phil

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              • #8
                I think it is a medicine people take when they have a transplant so their body won't reject the new transplant. Example: heart or liver transplant. But they are beginning to use this medicine for other reason.

                Take care, Trishann

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                • #9
                  The full abstract

                  [121] EVALUATION OF SYMPTOMS IN PATIENTS WITH INTERSTITIAL CYSTITIS TREATED WITH CYCLOSPORINE A

                  Jamil Chade, MD, Antonio M Lucon, MD, Daher C Chade, MD, Miguel Srougi, MD, PhD. University of São Paulo, São Paulo, Brazil

                  Introduction and Objective: Interstitial Cystitis (IC) is a troublesome disease of the urinary bladder. Although 15 different types of medical treatment have been used, none of them has been successful and the patients are reluctant to accept the majority of them. We report our experience with cyclosporine A for interstitial cystitis.
                  Methods: Two male and 34 female patients who fulfilled the NIDDKD (National Institute for Diabetes and Digestive and Kidney Diseases) criteria for the diagnosis of IC were included in this study. Diagnosis was confirmed by voiding diary, urodynamic evaluation, cystoscopic examination, and biopsy of the bladder. The symptoms were measured using O´Leary-Sant interstitial cystitis symptoms index (ICSI) before and after the proposed treatment. All patients had been treated with other drugs previously, unsuccessfully. After signing the informed consent, they received 1.5 mg/kg of cyclosporine A, twice a day, for 12 months. The patients were re-evaluated for the symptoms (ICSI) and by urodynamics at 6 and 12 months of treatment. Results: All patients prior to treatment presented with the maximum ICSI score of 36. The mean ICSI score decreased from 36 to 21,6 at 6 months of treatment, and to 15,2 at 12 months (p<0,001), with a mean decrease of 15,4 and 20,8, respectivelly. The mean decrease from initial symptoms score to 6 months after was 15,4 (p<0,001). The mean decrease from initial symptoms score until 12 months of treatment was 20,8 (p<0,001). Considering the bladder capacity evaluated by urodynamics, a mean increase of 92,9mL at 6 months and 107,4mL at 12 months of treatment was found. All the patients had biochemical analysis before and after the treatment, and no abnormalities were found for liver and renal function.
                  Conclusions: Considering the treatment of IC, cyclosporine A represents a new alternative. The good tolerance, safety, and promising results recommend the use of cyclosporine A for the treatment of IC.

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                  • #10
                    Thanks Jill...I love information like this...it gives this pessimist the hope I need...

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                    • #11
                      Where can I find the 'O´Leary-Sant interstitial cystitis symptoms index'? I wish they would have reported symptoms as 1) how many times a day going to the bathroom and 2)pain scale.

                      Thanks. Stacy

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                      • #12
                        My IC was originally diagnosed with the survey. It does have a rating for pain and # of time you go to the bathroom each day. I don't remember for sure what my score was the first time I took it. I think the total score is 35 and I believe I had 32. After treatment (and I KNOW it doesn't work for everyone) my score was 0 the first time and has increased or decresased by 3-4 points over the years. I complete a survey with each 6 month follow-up. When it goes up we talk about changes. When score goes down we talk about changes.

                        I have had 3 urodynamics for a totally unrelated condition. I was being treated for IC based on symptoms and the cysto confirmed IC. The urodynamics would have never been performed to diagnose IC. My urogyne thinks that more invasive testing are not necessary to "diagnose" IC when the symptom scale is as accurate predictor. I think all MD's should pay attention to symptoms rather than trying to "diagnose" with invasive test before they will try any treatments. If the treatment works who cares what they call it.
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas
                        Louann

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                        • #13
                          Thanks for the tip, I'll have to talk to my urologist at my next appointment in a few weeks. All of the kids I took care of at my last job who had heart transplants were on it, hope it can help those of us with IC who don't respond to typical treatments.
                          Meds regimen: Elmiron 100mg Daily, Allegra 180mg Daily, Nuvaring, a probiotic

                          other medical issues- IC, IBS, Migraines, Eczema, Asthma, Allergies, Syncopal episodes (that they still don't know what causes them...) and extremely loose joints

                          Drink choices: water, and the occasional caffeine free pop

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                          • #14
                            I don't think I will get too excited about the prospect of using cyclosporine, an immune suppresent for IC.. I have been using Imuran, another immune suppressant, for nearly 20 years for Crohn's disease. I still have IC. I never ask to have my dosage increased because higher doses can cause increased risk of cancer and other serious blood disorders. These are very serious drugs that can make getting over the flu or other infections very difficult. One's entire immune system is suppressed. This is not a targeted treatment that would only suppress blood cells that may cause IC. It would make sense, to research this drug, before taking it. Darlene

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                            • #15
                              My dog takes cyclosporine drops for a "dry eye" immune condition.
                              The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                              First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                              Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                              Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                              Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                              BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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