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Liris trial suspended in Kingston Ontario

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  • Liris trial suspended in Kingston Ontario

    I was scheduled for the second phase of the Liris trial earlier this month (July) in which I would have the actual (not a placebo) device inserted by cystoscopy. a few days before the insertion date the nurse was disappointed to have to inform me that the study was suspended indefinitely. the two doctors heading the study here in Kingston, Ontario had no forewarning or indication that this would happen. while the device was very painful to have inserted, there were very promising results with the other patients in the study. i am pretty sure i got a placebo in "phase 1" because i felt the device the whole time it was in and couldn't do even light exercise. while this is an unfortunate aspect of the study, the assurance that I could enter "phase 2" and definitely get the real deal sounded like the best treatment prospect i've had in years. from what my nurses have told me, I know that Taris Biomedical would like to find a way to insert the device via catheter rather than cystoscope but personally I do no think the painful insertion warranted suspension of the trial. enduring twelve minutes of pain (a new level of pain for me) would still be worth the beneficial period patients have thus far reported. I am waiting for more news and am very much hoping that the trial resumes. I will keep this post updated and please respond if anyone was undergone a similar experience with this trial. any news would be a great help.
    Best Wishes.
    Pumpkinbeck
    Currently switching from pharmaceutical to nutritional supplement therapy (ever so slowly and with my doctor's continual guidance!)
    Currently taking:
    Elavil, Hydroxyzine, Clonazepam, Pyridium, Prelief, Hydromorphone, Opium and Belladonna (BNO), B Complex, Magnesium (1000mg), Methionine, Zinc, St. John's Wort, Probiotics, MSM, Green's Plus

  • #2
    Have there been any further updates on this?

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    • #3
      I went throught the whole trial, both phases. It really didn't do anyting for me, but I suffer now more from urgency and frequency and only have pain infrequently.

      Comment


      • #4
        I have been told by my nurse that Taris Biomedical (the company that makes the liris device) is analyzing the data collected thus far and will not be proceeding with the study until they do.
        Pumpkinbeck
        Currently switching from pharmaceutical to nutritional supplement therapy (ever so slowly and with my doctor's continual guidance!)
        Currently taking:
        Elavil, Hydroxyzine, Clonazepam, Pyridium, Prelief, Hydromorphone, Opium and Belladonna (BNO), B Complex, Magnesium (1000mg), Methionine, Zinc, St. John's Wort, Probiotics, MSM, Green's Plus

        Comment


        • #5
          My dr. told me that crystals were forming in the pretzel, making removal painful and difficult. I'm with pumpkinbeck though- I'd trade a few minutes of discomfort for a few weeks of relief.

          Comment


          • #6
            Anyone heard anything about this as of late? I'm wondering if they given up on Liris or if the company is trying to modify the device in some way?
            "Where there is hope there can be faith. Where there is faith, miracles can occur."

            Comment


            • #7
              The trial is resuming here in Kingston sometime in the winter. Unfortunately and somewhat unethically, they dropped the patients with refractory IC from the study - myself being one of them. My uro. is negotiating to get us back in by looking at level of improvement versus complete resolution of symptoms. Taris is redesigning the device to be smaller and insertable through catheter. I'll post if I hear anything new. My best to all.
              pb
              Pumpkinbeck
              Currently switching from pharmaceutical to nutritional supplement therapy (ever so slowly and with my doctor's continual guidance!)
              Currently taking:
              Elavil, Hydroxyzine, Clonazepam, Pyridium, Prelief, Hydromorphone, Opium and Belladonna (BNO), B Complex, Magnesium (1000mg), Methionine, Zinc, St. John's Wort, Probiotics, MSM, Green's Plus

              Comment


              • #8
                Interesting. I hadn't heard this!
                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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                • #9
                  I tried to get in on this study and I was told that they had to suspend the clinical trials because of the paperwork. Apparently there was a technical issue with the paperwork. I hop they bring it back because I have high hopes for this treatment. If it works Its gonna be great.

                  Comment


                  • #10
                    Re: Liris trial suspended in Kingston Ontario

                    I live in victoria bc starting trial Oct 6 2015 have suffered far to long. The cystitis has sucked the life out of me. bladder stretch has not done much good. Much pain and burning.
                    Last edited by keeler; 09-21-2015, 05:58 PM. Reason: added few more words

                    Comment


                    • #11
                      Re: Liris trial suspended in Kingston Ontario

                      Good luck! I pray you find the relief you are looking for. Keep us posted:-)
                      "Where there is hope there can be faith. Where there is faith, miracles can occur."

                      Comment


                      • #12
                        Re: Liris trial suspended in Kingston Ontario

                        OT (Sorry OP!):

                        JVR did you see my response to your visitor message I left? I was going to PM it to you but your box is full. No worries if you did I just want to make sure you don't think I am ignoring you. :P
                        My IC has been stable for 2+ years now and I don't even think about my bladder most days. It's such a great non-feeling! My hope for you all is that you get to a point where you can start living again. It can and will happen! Don't give up ever!

                        History:

                        Age: 31
                        Diagnosed: 2011
                        Urologist: A truly wonderful doctor who specializes in IC and is not afraid to manage the pain of his patients.
                        Surgeries: Cystoscopy with Hydrodistention (2011); Laparoscopy (2012)
                        Medications for IC: Benadryl, Elavil, Elmiron, Gildess FE (continuous) (also for Endo), Nucynta, and Prelief.
                        Flares: Pyridium or Cystex, Tums, vanilla ice cream, plain baked potato, and Valium.
                        IC diet: Yes! It took me 1 and 1/2 months with NO cheating (that's SO important) to notice it working. However now, I am able to cheat occasionally. But I never overdo it.
                        Other medications: Atenolol, Cymbalta, Armour Thyroid, and Zetia.
                        Other conditions: Endometriosis (stable), Fibromyalgia (stable), Hypothyroidism (not stable) and of course IC (stable).

                        Comment


                        • #13
                          Re: Liris trial suspended in Kingston Ontario

                          Yes, thank you Andreeuh! I really appreciate you sharing all of that with me. It's so helpful to compare notes sometimes. Your positive story inspires me:-). Thanks again!
                          "Where there is hope there can be faith. Where there is faith, miracles can occur."

                          Comment


                          • #14
                            Re: Liris trial suspended in Kingston Ontario

                            Originally posted by jvr View Post
                            Yes, thank you Andreeuh! I really appreciate you sharing all of that with me. It's so helpful to compare notes sometimes. Your positive story inspires me:-). Thanks again!
                            No worries! Feel free to contact me again if you ever need someone to talk to.
                            My IC has been stable for 2+ years now and I don't even think about my bladder most days. It's such a great non-feeling! My hope for you all is that you get to a point where you can start living again. It can and will happen! Don't give up ever!

                            History:

                            Age: 31
                            Diagnosed: 2011
                            Urologist: A truly wonderful doctor who specializes in IC and is not afraid to manage the pain of his patients.
                            Surgeries: Cystoscopy with Hydrodistention (2011); Laparoscopy (2012)
                            Medications for IC: Benadryl, Elavil, Elmiron, Gildess FE (continuous) (also for Endo), Nucynta, and Prelief.
                            Flares: Pyridium or Cystex, Tums, vanilla ice cream, plain baked potato, and Valium.
                            IC diet: Yes! It took me 1 and 1/2 months with NO cheating (that's SO important) to notice it working. However now, I am able to cheat occasionally. But I never overdo it.
                            Other medications: Atenolol, Cymbalta, Armour Thyroid, and Zetia.
                            Other conditions: Endometriosis (stable), Fibromyalgia (stable), Hypothyroidism (not stable) and of course IC (stable).

                            Comment

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