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LIRIS Success

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  • kenvh
    replied
    Re: LIRIS Success

    Originally posted by km413 View Post
    Go to the Home page for this website. "research" will show up as a link you can click on. When you get to the research page, there is a list of studies - click on "LINKA study in North America for females with Hunners Lesions."
    This will take you to details about the study and as you scroll through the details, it will show you all the sites where the study is being done. Good luck!

    In July, I am joining another study (AQX-1125 Leadership 301 Trial) - totally different study. I figure I'll try another one while I am praying for LIRIS to get FDA approved.
    How does it go the aqx-1125 Rosiptor trial? Helps?

    Leave a comment:


  • Lisa Volk
    replied
    Re: LIRIS Success

    Originally posted by km413 View Post
    Lisa - do you have Hunner's Lesions? They are still recruiting for that. I would double check if I were you to be sure on whether or not you can get into it. They extended the recruitment date at least once.
    I hope it doesn't take 5 years for approval. I am tired of putting up with these symptoms when I know there is something that would help me if it just got approved! Nothing else has helped me. I hear you about having it up to to know where! Good luck with your new urologist!

    Pretty sure that I do. Haven't gotten the records from my old Urologist to the new yet. There are no Trials going on anywhere in Colorado (I'm in Denver). You're right; I was blocked out from contacting the study managers for the first LiRIS study, but not the 2nd (the one with Hunner's lesions).

    Unfortunately the closest facility to me is in Idaho, for pete's sake! I'll try some of the ones which may be easier to get to BY AIR than Idaho. I certainly can't imagine taking a long road trip to Idaho. What good is a study participant who shows up dead?

    Thanks again for the advice. Much appreciated!
    Last edited by Lisa Volk; 06-15-2017, 04:12 PM. Reason: grammer

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  • km413
    replied
    Re: LIRIS Success

    Originally posted by Lisa Volk View Post
    km413

    Thank you so much for your timely response. Will do. Seeing new Urologist tomorrow. Oh joy.

    Just checked for study of Linka (which is what I'm interested in; I've had it up to you know where with oral meds).

    Both studies say the deadline for entry was back in 2016. Drat!!! VERY ANNOYING. Apparently it will be approximately 5 years before it's on the market (if it clears the FDA).

    Thanks for letting me know where to find this kind of stuff though.
    Lisa - do you have Hunner's Lesions? They are still recruiting for that. I would double check if I were you to be sure on whether or not you can get into it. They extended the recruitment date at least once.
    I hope it doesn't take 5 years for approval. I am tired of putting up with these symptoms when I know there is something that would help me if it just got approved! Nothing else has helped me. I hear you about having it up to to know where!😬 Good luck with your new urologist!

    Leave a comment:


  • Lisa Volk
    replied
    Re: LIRIS Success

    km413

    Thank you so much for your timely response. Will do. Seeing new Urologist tomorrow. Oh joy.

    Just checked for study of Linka (which is what I'm interested in; I've had it up to you know where with oral meds).

    Both studies say the deadline for entry was back in 2016. Drat!!! VERY ANNOYING. Apparently it will be approximately 5 years before it's on the market (if it clears the FDA).

    Thanks for letting me know where to find this kind of stuff though.
    Last edited by Lisa Volk; 06-15-2017, 11:25 AM. Reason: Had not checked the recommended page

    Leave a comment:


  • km413
    replied
    Re: LIRIS Success

    Go to the Home page for this website. "research" will show up as a link you can click on. When you get to the research page, there is a list of studies - click on "LINKA study in North America for females with Hunners Lesions."
    This will take you to details about the study and as you scroll through the details, it will show you all the sites where the study is being done. Good luck!

    In July, I am joining another study (AQX-1125 Leadership 301 Trial) - totally different study. I figure I'll try another one while I am praying for LIRIS to get FDA approved.

    Leave a comment:


  • Lisa Volk
    replied
    Re: LIRIS Success

    How does one find a link to participating in the study. I've had I.C. for 37 years (diagnosed very young) and it is worse than ever. I would love to be in this clinical trial. I never thought I'd volunteer for another study, since I've given my body to science for I.C. research for many years; I'm worn out from doing it so many times.

    However, this one seems to offer some promise of a reward for your "services" to the cause. I would love to find out how/where to participate.

    Leave a comment:


  • km413
    replied
    Re: LIRIS Success

    Hope you continue to get good results! ❤️

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  • ICNDonna
    replied
    Re: LIRIS Success

    Thank you for sharing. I'm happy it's working for you. I'm in a study program for cancer --- and it seems to be working too.

    Warm hugs,
    Donna

    Leave a comment:


  • icshorty
    replied
    Re: LIRIS Success

    That is terrific-congratulations & thanks for passing along something for others to try!

    Leave a comment:


  • km413
    started a topic LIRIS Success

    LIRIS Success

    I just had my exit appointment yesterday for the LIRIS study. I have IC with Hunners Lesions. I was accepted into the study on July 21, 2016. I have had amazing success and relief in this trial. My symptoms of frequency, urgency, and pain went away about 3 days after the the first LIRIS insertion. The Hunners Lesions also went away - it was amazing to see the change in my bladder when I had cystoscopy! I felt better than I had felt in over 6 years. My symptoms stayed away for about 3 months. I just had the extension dose on January 12, 2017. Again, all my symptoms went away. I am hoping it will last longer this time.
    From 2011 - 2016, I had tried Vesicare, Sanctura XR, Myrbetriq, 10 weeks of PT, Hydrodistention (6 times), and have an InterStim. I sometimes had minor relief from the hydrodistention and the InterStim, but nothing like the relief I had from LIRIS.
    I would urge anyone who has IC with Hunners Lesions to find a study near them and try this. They are still accepting people in this study.
    I travelled from my home in the Chicago suburbs to Beaumont Hospital in Michigan for this. It was worth all the travel to work with Dr. Kenneth Peters and find out that there is something that helps me!
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