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Pros/Cons of Cyclosporine?

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  • Pros/Cons of Cyclosporine?

    My uro suggested this to me today. Said I'd be a good candidate for it since my only symptom is spasms. I'm seriously considering taking it, but I would like a general consensus of those who had positive versus negative experiences with it?
    • 27 year old student
    • Had symptoms since I was 5
    • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
    • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
    • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
    • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


    Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

    What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

    What didn't work: Elavil, vistaril (12/22)

  • #2
    Some notes on the studies of the medicine:

    http://www.medpagetoday.com/MeetingCoverage/AUA/26672

    http://urologytimes.modernmedicine.c.../detail/475196
    • 27 year old student
    • Had symptoms since I was 5
    • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
    • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
    • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
    • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


    Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

    What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

    What didn't work: Elavil, vistaril (12/22)

    Comment


    • #3
      Reply:

      Cyclosporine works by suppressing the immune system. The reasoning in treating IC is assuming that it is an autoimmune disease, that is, the immune system is overactive and is attacking the bladder as if it were an enemy.

      Usually it's given to people recently given an organ transplant so that the person's body doesn't reject the new organ. But, there has been great success with it in treating IC.

      It's important to know that it is a somewhat "heavy" drug and that your kidneys and blood pressure have to be monitored (similar to getting blood tests for Elmiron to check liver and kidneys). So, for mild IC, I wouldn't recommend Cyclosporine.

      I'm considering taking it as well and am going to discuss it with my Doc on Tuesday. I think that if it totally took away my IC symptoms, the side effects would be worth it for sure.

      Good luck, let us know what happens,

      Molly
      Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

      Medical research addict.

      Likes: hot baths and naps with cats

      Comment


      • #4
        Yeah, I know how it works. i just want to know how bad it'd make people feel in general, but I'm probably going to agree to it.
        • 27 year old student
        • Had symptoms since I was 5
        • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
        • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
        • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
        • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


        Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

        What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

        What didn't work: Elavil, vistaril (12/22)

        Comment


        • #5
          I have been on it a month. I just get a little more tired than I used to but its not bad.
          Frequency/Urgency, Mild Pain, Spasms, Pressure

          I have tried:
          Bladder Spasm medications and antidepressants - all cause mydriasis
          Antihistimine - Mydriasis
          Cyclosporine - side effects
          Elmiron - side effects
          Interstim
          Botox - can't pee but need to all the time
          Mild Hyrdo
          My 11 year old german shepherd taken away because I am no longer able to care for him. Feeling yet another failure.

          I am trying:
          Omega 3
          IC and anti oxalate diet but staying on Cystoprotek
          Acacia Fiber (helping some)
          Hugs and Kisses from my German Shepherd

          Comment


          • #6
            Third week on it i'm not seeing much difference. I'm only 50 mg twice a day
            • 27 year old student
            • Had symptoms since I was 5
            • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
            • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
            • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
            • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


            Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

            What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

            What didn't work: Elavil, vistaril (12/22)

            Comment


            • #7
              Still no negatives to it but the blood tests.
              • 27 year old student
              • Had symptoms since I was 5
              • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
              • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
              • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
              • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


              Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

              What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

              What didn't work: Elavil, vistaril (12/22)

              Comment


              • #8
                It doesn't seem to stop the winter flare, sadly. But I did better than last year..so who knows?
                • 27 year old student
                • Had symptoms since I was 5
                • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                What didn't work: Elavil, vistaril (12/22)

                Comment


                • #9
                  I can safely say it has no negative effects for me. Boyfriend was sick, sick, sick and all I got was a minor sore throat that was fixed by gurgling anti-septic mouthwash. Then I lol'd that he was sick and my immune system was still stronger than his even with those meds..
                  • 27 year old student
                  • Had symptoms since I was 5
                  • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                  • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                  • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                  • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                  Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                  What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                  What didn't work: Elavil, vistaril (12/22)

                  Comment


                  • #10
                    not sure of the dosage you would be perscribed but ive been on cyclosporine for 6 yrs due to my other autoimmune disease. 250 mgs. it causes me extremely puffy gums, extra facial hair and tiredness.
                    Not yet diagnosed with IC

                    Symptoms are constant urgency. Always worst at night, and at this time, bladder feels "sore", like it's too full. I urinate and maybe 2 tbs come out


                    failed meds: sanctura (retention and severe dry mouth)

                    Comment

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