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  • Participating in IC study for new medicine

    Hello all. I'm still kinda new to the site and wanted some advice. Tomorrow, I will be participating in a study for a new IC drug. I think it is LiRIS, but ill find out tomorrow for sure. I have to visit every week for 10 weeks. I'm excited because I want to help find a cure, or at least some relief, for this terrible thing we all suffer from. I was wondering if anyone else has done a trial for IC medicines before? I'm very nervous, since this is my first time. The lady I spoke with said I will be getting all kinds of tests done first, including a cytoscopy. I have had one before, but it was 9 years ago. Has the procedure improved since then? I remember it being painful afterwards, even though I was asleep for the procedure. Any advice? Thanks in advance and ill update you all as often as I can with the whole study. Oh, and if anyone else is wondering about how to join this study, visit bladderpainstudy.com
    IC my whole life. Diagnosed 9 years ago. 30-50 potty trips a day. Currently participating in AF219-005, a new drug study for IC. Hopeful for a cure.
    This is the link to my updates on the study drug: http://www.ic-network.com/forum/show...r-new-medicine

  • #2
    Interesting. Have you had IC long? I'm willing to be in any study. But I'm new to this so I never qualify for any. Good luck! Let us know how you do.

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    • #3
      Yes, I have had IC my whole life, but was not diagnosed until I was 18/19 years old. I am 27 now. This study gives you a pre screening survey online and will let you know if you prequalify. Someone then contacted me by email, then phone the next day. Ill update as much as I can. Thanks.
      IC my whole life. Diagnosed 9 years ago. 30-50 potty trips a day. Currently participating in AF219-005, a new drug study for IC. Hopeful for a cure.
      This is the link to my updates on the study drug: http://www.ic-network.com/forum/show...r-new-medicine

      Comment


      • #4
        Originally posted by Lexus View Post
        Hello all. I'm still kinda new to the site and wanted some advice. Tomorrow, I will be participating in a study for a new IC drug. I think it is LiRIS, but ill find out tomorrow for sure. I have to visit every week for 10 weeks. I'm excited because I want to help find a cure, or at least some relief, for this terrible thing we all suffer from. I was wondering if anyone else has done a trial for IC medicines before? I'm very nervous, since this is my first time. The lady I spoke with said I will be getting all kinds of tests done first, including a cytoscopy. I have had one before, but it was 9 years ago. Has the procedure improved since then? I remember it being painful afterwards, even though I was asleep for the procedure. Any advice? Thanks in advance and ill update you all as often as I can with the whole study. Oh, and if anyone else is wondering about how to join this study, visit bladderpainstudy.com
        Hooray for you for being willing to do this. I volunteered for a clinical trial several years ago, but by the time the study began in my area, the trial had been cancelled. It was disappointing.

        If you can manage to relax, the cysto isn't too bad for me. I concentrate on breathing slowly and deeply and relaxing my whole body.

        Stay safe


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        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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        [3MG]

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        • #5
          Hello everyone. I just got back home from my first visit. It turns out, this is a new drug. It is not LiRIS. It doesnt even have a name yet, just numbers and letters. It is a Phase 2 study in IC/BPS patients. They had to run some tests, do paperwork, etc. I will hear from them soon if I qualify to start using the medicine or placebo. The staff was amazing. I'm excited and hope I pass everything to continue.
          IC my whole life. Diagnosed 9 years ago. 30-50 potty trips a day. Currently participating in AF219-005, a new drug study for IC. Hopeful for a cure.
          This is the link to my updates on the study drug: http://www.ic-network.com/forum/show...r-new-medicine

          Comment


          • #6
            God Bless you, I'm 22 and was diagnosed a few months ago. I hope everything with the study goes smoothly, and we find a cure or at least something to give us relief. Wish you all the best. Keep us updated.
            27 years old
            Symptoms began 01/2013
            Diagnosed 04/2013

            Managing symptoms with the help of Chinese medicine


            Hoping to heal

            Comment


            • #7
              I got the phone call I was wanting today. I passed all the first round tests last week and now I get to participate in the study. I go back this Friday to have a bladder ultrasound, CT scan, etc. You know you are desperate for relief when you are excited about testing a new drug. Also, it's name for now, is AF-219-005. It is supposed to block P2X3 receptors in the bladder. I hope it works.
              IC my whole life. Diagnosed 9 years ago. 30-50 potty trips a day. Currently participating in AF219-005, a new drug study for IC. Hopeful for a cure.
              This is the link to my updates on the study drug: http://www.ic-network.com/forum/show...r-new-medicine

              Comment


              • #8
                Originally posted by Lexus View Post
                I got the phone call I was wanting today. I passed all the first round tests last week and now I get to participate in the study. I go back this Friday to have a bladder ultrasound, CT scan, etc. You know you are desperate for relief when you are excited about testing a new drug. Also, it's name for now, is AF-219-005. It is supposed to block P2X3 receptors in the bladder. I hope it works.
                Sounds promising! How did you get to be a part of the study?

                Comment


                • #9
                  I pre qualified on the website, then went to nearest study clinic for the drug. I had to do a few tests: blood, urine, EKG, questionares, etc.
                  IC my whole life. Diagnosed 9 years ago. 30-50 potty trips a day. Currently participating in AF219-005, a new drug study for IC. Hopeful for a cure.
                  This is the link to my updates on the study drug: http://www.ic-network.com/forum/show...r-new-medicine

                  Comment


                  • #10
                    Originally posted by Lexus View Post
                    I pre qualified on the website, then went to nearest study clinic for the drug. I had to do a few tests: blood, urine, EKG, questionares, etc.
                    May I ask what website? I probably won't qualify as I've had it less then 6 months. But I'd like to check it out.

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                    • #11
                      I was asked also but to waste time if I get a placebo and I would have to drive 2 hrs for 8 weeks, not worth it to me for my sanity or my bladder. Good luck to you!
                      Love the person, hate the sin!

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                      • #12
                        I took the on-line prequalifying test today and I did not pass. It could be my sulfa allergy or the fact that I've taken steroids within the last 3 months. Or maybe my age? I don't know.

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                        • #13
                          I live in Az and prequalified and just got called for my first appointment next friday. I hope I pass the first round tests. I was diagnosed 2 years ago; keeping my fingers crossed.
                          Jennifer

                          Comment


                          • #14
                            Originally posted by Lexus View Post
                            Hello everyone. I just got back home from my first visit. It turns out, this is a new drug. It is not LiRIS. It doesnt even have a name yet, just numbers and letters. It is a Phase 2 study in IC/BPS patients. They had to run some tests, do paperwork, etc. I will hear from them soon if I qualify to start using the medicine or placebo. The staff was amazing. I'm excited and hope I pass everything to continue.
                            Please let us know if you find out it is a sulfa drug.. I believe I am allergic I really hope it is not.
                            27 years old
                            Symptoms began 01/2013
                            Diagnosed 04/2013

                            Managing symptoms with the help of Chinese medicine


                            Hoping to heal

                            Comment


                            • #15
                              Not sure if it is a sulfa drug, ill ask Friday. Good luck jlrobin! Keep me updated. The first tests were just blood, urine, EKG, and a lot of paperwork.
                              IC my whole life. Diagnosed 9 years ago. 30-50 potty trips a day. Currently participating in AF219-005, a new drug study for IC. Hopeful for a cure.
                              This is the link to my updates on the study drug: http://www.ic-network.com/forum/show...r-new-medicine

                              Comment

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