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LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystitis

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  • Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

    Also Mack, there are things that can be done for ulcers specifically such as cauterizing them. I have a friend who gets hers cauterized along with getting botox every 3 months. This gives her a lot of relief...hopefully some of the guys and gals who have then can chime in and offer some advice.....
    "Where there is hope there can be faith. Where there is faith, miracles can occur."

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    • Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

      Originally posted by Mack View Post
      Not sure why the links not working, these are the start and finish dates
      Estimated Enrollment: 116
      Study Start Date: May 2015
      Estimated Study Completion Date: May 2017
      Estimated Primary Completion Date: November 2016 (Final data collection date for primary outcome measure)

      They excluded anyone with hunners ulcers, this time. I'm guessing because the placebo made one girl have blood and tissue in her urine, as Loulou reported.

      I know it won't cure me, but I thought I had the potential to heal hunners ulcers for a time. Did I misread that?

      Do you recommend going to a pain specialist? I haven't explored that route yet, but I'm having a really hard time managing my pain lately. The blue pills are starting to loose effiency, which is the only thing I have for pain. It seems I'm on the verge of going to the er at least 3-4 times a month. I really can't afford to go, but when your in that kind of pain you don't care. I swear I always get worse on the weekend when my doctors office is closed. I stopped of at an urgent care on Friday as a last ditch effort to avoid the er this weekend. They called my urologist and he walked them through how to do a rescue solution, and I felt fantastic all day yesterday, but the pain and burning are coming back this morning x.x have an appointment on Monday to get a prescription for elmerion, I'm nervous to try it, but desperate for relief. Seems like Everything else I've tried has sent me spiraling into even more pain, which gives me extreme anxiety to try new things... Which hurts my bladder even more. Hopefully I'll find something soon that will help it get under control. Staying positive most of the time, because I do realize how I feel pain is greatly affected by my mindset. Acupuncture seems to be helping. Also supposed to start pelvic floor therapy on Wednesday. Hoping this helps with some of the pain. Sometimes I can literally see and feel my bladder and trying to climb out of my body. It's like a little alien in my pelvis. Lol. So naturally my pelvic floor is TIGHT.
      Hi Mack,

      I should written something more like this: Go to anyone who will help you to get some pain medication. Sometimes the primary care doctors send patients to the pain management clinics and they too avoid giving any real pain medicine. They seem to try to skirt around the actual prescribing of medicine that will work. So, we've had enough time pass, since the FDA cracked down, to see that many IC patients go BACK to their Primary Doctor after the pain management clinic failed us and THEN the doctor will write for a pain medicine. It doesn't matter who, or what kind of doctor it is-------------in fact, we've found here, as a group, that Urologists almost NEVER give pain medication prescriptions. However, if you find a pain management clinic that will look at different pain meds for you and work with you as a person and not treat you like a drug fiend, then that is a good thing!!

      I did not know that about the Uros at first and neither did my primary care Dr. He referred me and thought that she would try a variety of things looking for something that would give me back my life. She did not do any such thing.

      One smart, famous doctor said, "if I treat your pain, I am treating your disease."

      Now, I don't mean we should drink coffee, eat chocolate and take pain pills all day. I mean that we work with our own diet using an elimination list of food we eat, we learn what hurts us, not Suzy or Tommy and we also look for other self-card helps and then we try some of the non-narcotic ideas and if after all that we still have pain then we need to find a doctor that will prescribe it for us. And then we can continue to keep a pain diary, a food diary, and the self-help too.

      The other member answered the other question which I didn't know that answer to anyway.

      I hope you get better.
      Thanks!!!

      Comment


      • Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

        Originally posted by Mack View Post
        Not sure why the links not working, these are the start and finish dates
        Estimated Enrollment: 116
        Study Start Date: May 2015
        Estimated Study Completion Date: May 2017
        Estimated Primary Completion Date: November 2016 (Final data collection date for primary outcome measure)

        They excluded anyone with hunners ulcers, this time. I'm guessing because the placebo made one girl have blood and tissue in her urine, as Loulou reported.

        I know it won't cure me, but I thought I had the potential to heal hunners ulcers for a time. Did I misread that?

        Do you recommend going to a pain specialist? I haven't explored that route yet, but I'm having a really hard time managing my pain lately. The blue pills are starting to loose effiency, which is the only thing I have for pain. It seems I'm on the verge of going to the er at least 3-4 times a month. I really can't afford to go, but when your in that kind of pain you don't care. I swear I always get worse on the weekend when my doctors office is closed. I stopped of at an urgent care on Friday as a last ditch effort to avoid the er this weekend. They called my urologist and he walked them through how to do a rescue solution, and I felt fantastic all day yesterday, but the pain and burning are coming back this morning x.x have an appointment on Monday to get a prescription for elmerion, I'm nervous to try it, but desperate for relief. Seems like Everything else I've tried has sent me spiraling into even more pain, which gives me extreme anxiety to try new things... Which hurts my bladder even more. Hopefully I'll find something soon that will help it get under control. Staying positive most of the time, because I do realize how I feel pain is greatly affected by my mindset. Acupuncture seems to be helping. Also supposed to start pelvic floor therapy on Wednesday. Hoping this helps with some of the pain. Sometimes I can literally see and feel my bladder and trying to climb out of my body. It's like a little alien in my pelvis. Lol. So naturally my pelvic floor is TIGHT.
        This is Lou Lou girl Mack, I am now allowed 4 instillations a day. I have to take 30mg of Oxy, 4 times daily too. It seems that I have some tolerance building up from using the instillations. For the first 6 months, I did not need pain meds because the instills were enough to treat my pain. Not so now. They still work though, but my Oxy dosage has had to be raised. I have had so many infections that now I'm getting yeast infections from the antibiotics. So, yeast and bacteria are having a tennis match, but my IC pain so bad that I just can't stop using the instills. If I have to stop them, the doc will put me on long acting Oxycotin. I'm not sure how I feel about that, but that is all I have left. He is not for me getting my bladder removed. Waiting for the Liris device to come on the market and rescue me. I would check around and see about them once daily. They will help especially since that one worked for you all day long. I use Marcaine. It is longer acting than Lidocaine. I have found that I can buy most of my supplies from Amazon and vitalitymedical.com. 54 cents for catheters. Saved tons buying the supplies on line than from the local pharmacy. Just a few tips. Hope you are doing better.

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