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

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  • Lou Lou girl
    replied
    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.

    Leave a comment:


  • Clevsea
    replied
    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!!!

    Leave a comment:


  • jvr
    replied
    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.....

    Leave a comment:


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

    Hi,
    They are doing one clinical trial with Hunners Ulcers and one on IC patients without. You can go to clinicaltrials.gov to check it out. Liris actually healed the ulcers in 5 out of 6 patients. My daughter's IC Specialist said this blew him away and most weren't expecting results that good. My daughter's doctor thinks that the fda may approve this based on how effective it can be at healing the ulcers which should thankfully open this treatment up to all types of IC once approved. Fingers crossed!

    Leave a comment:


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

    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.

    Leave a comment:


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

    Originally posted by Mack View Post
    I found this
    https://www.clinicaltrials.gov/ct2/show/NCT02411110

    Thanks for the amazing updates, just read through this article while trying to find out more about hunners ulcers. This is the first time I've posted on the forum, but I've been browsing it off and on for some months. I was just diagnosed in January 2015, and my ic has progressed super quickly. They scoped me in August and the only thing reportable was a rippled bladder. Uro told me to stop straining while peeing, I now know i had pfd. Had one other flair between August and January. I started flairing on Christmas Day (too many chocolately sweets) and was peeing blood five days later. Doctor never told me I have ulcers, but I was peeing blood and a bit of tissue so it seems obvious to me. Since then I've been in a
    Constant flair. Im only 25 so I am deeply concerned about my future. This bladder isn't going to last me at this rate. This has given me the first glimmer of hope have had in some time. Fingers cross the fda approves it!
    That link did not work for me Mack but I wanted to say that I have been in a constant flare for 3.5 years now. We who are always in a flare regardless of how well we eat have to find other self-help tactics and a pain management clinic if we can.

    There is at least one other member here who also is in a constant flare and I'd think there are more of them.

    I hope the LiRIS is legalized soon and that it will alleviate the pain we have. It won't heal our bladders, it will numb our bladders. It's like having Novacaine (like at the dentist) only it's a quarter-sized thing that is constantly releasing a numbing drug called Lidocaine. They would be smart to add medication to it that might heal the bladder too.

    I'm afraid it will just make my bladder mad.

    But I still have hope.

    Thanks!!

    Leave a comment:


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

    I found this
    https://www.clinicaltrials.gov/ct2/show/NCT02411110

    Thanks for the amazing updates, just read through this article while trying to find out more about hunners ulcers. This is the first time I've posted on the forum, but I've been browsing it off and on for some months. I was just diagnosed in January 2015, and my ic has progressed super quickly. They scoped me in August and the only thing reportable was a rippled bladder. Uro told me to stop straining while peeing, I now know i had pfd. Had one other flair between August and January. I started flairing on Christmas Day (too many chocolately sweets) and was peeing blood five days later. Doctor never told me I have ulcers, but I was peeing blood and a bit of tissue so it seems obvious to me. Since then I've been in a
    Constant flair. Im only 25 so I am deeply concerned about my future. This bladder isn't going to last me at this rate. This has given me the first glimmer of hope have had in some time. Fingers cross the fda approves it!

    Leave a comment:


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

    I was searching around trying to see what is going on with the Liris device. Heard that trials had stalled. I looked and the very latest that I have seen is in an article dated OCT. 2014 The link is http://newsoffice.mit.edu/2014/start...-acquired-1016 The article says that they are preparing for Phase III trials, but it is dated last OCt (2014). At least we know that as of Oct. they were planning on a STAGE III for Liris. Does anyone know of anything more recent on this. I don't mean just "rumors", but some current concrete evidence that this work is continuing for IC. This article was the most recent I could find. Lou Lou girl

    Leave a comment:


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

    Originally posted by Lou Lou girl View Post
    LaVessie,
    No. For me, it gives me 2 wks of pain relief before I needed to start my pain meds up again. Of course everyone is different. Some get more relief, some less. It is the same like with any other treatment. Lou Lou girl
    Hey I just wanted to let u know i got your message but when i tried to reply it said my sent box was empty. Probably having trouble cause i was doing it from my phone. Ill try to re send it tomorrow!

    Leave a comment:


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

    Originally posted by LaVessie View Post
    Hi loulougirl. I'm new to the forum but just read through your detailed LIRIS experience as it seems like a promising treatment, and my main symptom is pain. Thank you for sharing. I was wondering how you are doing and if you are still getting relief since the LIRIS?
    LaVessie,
    No. For me, it gives me 2 wks of pain relief before I needed to start my pain meds up again. Of course everyone is different. Some get more relief, some less. It is the same like with any other treatment. Lou Lou girl

    Leave a comment:


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

    Hi loulougirl. I'm new to the forum but just read through your detailed LIRIS experience as it seems like a promising treatment, and my main symptom is pain. Thank you for sharing. I was wondering how you are doing and if you are still getting relief since the LIRIS?

    Leave a comment:


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

    Update. I had the device removed yesterday, Fri. June 27th. I have a couple of corrections to make on a couple things I mentioned in previous posts. I also need to fill everyone in on what has happened since my last update. 1st correction is regarding the gadget that they are working on that would be designed to insert the Liris device without a cystoscopy. This gadget would not be for "at home use" by the patient. One would still have to go see their doctor to have it inserted, it just would not require a cystoscopy to insert it. This would still make the treatment cheaper. 2nd correction is about the # of participants who dropped out. I believe that I stated that of the four participants only the one who passed bloody clots did not finish the study. I have to retract that. The other 3 went ahead and finished the 1st phase of the double blinded part of the study. They did not have the device removed before it was time to remove it. These 3 said the device was quiet painful and opted not to continue with the second unblinded phase even though they were guaranteed to get the real lidocaine medicine in the second phase. Only one of these 3 was previously on prescription pain meds prior to the study. The other 2 who had not previously been prescribed them were not allowed to have them once the study was underway. It was against the rules for the study. It is believed that these 3 more than likely received the placebo. So 4 were not helped and 4 were helped greatly. Now, the following is what happened to me during the second unblinded phase when I received the real lidocaine device. I did go through some pretty tough pain this time, but their was a reason. I had family in from out of state and we vacationed i the mountains. We did some hiking. Also we stayed in a three story, 4000 sq. ft. cabin. This required going up and down stairs all the time. I was also up on my feet cooking and cleaning for 11 people. I also started exercising faithfully as I noticed I was starting to gain weight. All of this added activity caused a major flare in my IC. Jostling my bladder around all the time, I discovered, is not good for my IC. This triggered constant urinating. This meant that many times there simply was not enough urine in my bladder to allow the device to float properly. I had stressed the importance of hydrating well in previous posts. If you are flaring and constantly having to pee, it does not matter if you hydrate or not because the result is the same, little to no urine in the bladder. The device needs to float to be comfortable. I had to use triple the amount of Oxycodone to control the burning that was occurring. I could feel the device in the trigone and urethra. It felt as if I was going to pee the device out. I remedied this situation by stopping all exercise. I went to bed and stayed there. I rested and read books. The flare quickly died down, the peeing and burning went away. I was then able to drink fluids and not immediately pee them out. The device began floating again and all went smoothly from there on out. A mile stone was reached yesterday. I was able to have intercourse with husband. To some of you that might not be a "big deal", but for us it was a big deal. I had intercourse 11 months ago and once 6 months previous to that. So, only twice in a year and a half and both times it sent me into a major flare that took months to get under control. That is what sex does to me. Well, I was able to have that intimacy with my husband without a flare in symptoms whatsoever. This is truly a miracle. I believe the treatment with the Liris device is responsible for this miracle. I hope this device gets FDA approved quickly. I would not get this inserted without being prescribed Oxycodone though. One needs a strong pain killer until the lidocaine begins working. The time it takes to start working varies greatly from person to person. A fellow participant in this study began feeling the benefits after the first 3 days of burning, then she swiftly began to improve. During the first phase, I pretty much needed the whole two week treatment before getting the relief. During the second phase, I saw substantial relief a couple or three days before the removal of the device. Now I'm just waiting to see how long this relief lasts. Lou Lou girl

    Leave a comment:


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

    Late Tuesday and today (Wed.) I have had some burning in the trigone. I did stop and eat at a place that makes homemade fudge. I got the peanut butter flavor. Later, I wondered if the peanut butter in the fudge may have contained soy. Soy is a "no no" for me. This two week treatment with Liris looks like it is going to be a another roller coaster ride like the first treatment with up and downs. The first treatment took the full two weeks of treatment before getting the full benefit from the device. At least I am having some pain free days. Those don't happen at all without meds. So, having at least some pain free days without Oxycodone this early during treatment is a good sign. This would not have happened without the Liris device. I can't wait until I have had the full 2 weeks on this 2nd treatment when I will reap the full benefits. Will continue to update. Lou Lou girl

    Leave a comment:


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

    Also, this is the second day without pain. I have not had any Oxy today. Lou Lou girl

    Leave a comment:


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

    Yes, I confirmed that as the study advanced 4 were helped and 4 were not helped. The one that passed blood was the only drop out. I heard from the lady I'm working with at the hospital tell me that she heard from someone from Taris Biomedical that they are working on some kind of gismo that would allow a patient to insert this Liris device on their own without having to see a doctor and have it inserted via cystoscopy. Sounds interesting and also sounds like it would make this therapy cheaper. Just thought I'd let everyone know. Lou Lou girl

    Leave a comment:

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