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

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  • #31
    Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

    P.S. A tip for everyone....When my bladder is empty or really low on urine, I can feel the device laying in the trigone area near the urethra. I could feel this when I was doing an hours walk outside in the heat. I was a little dehydrated. The sensation "down there" kind of felt like i was trying to walk with a catheter in. While uncomfortable, it was not painful enough to cut my walk short. I finished the walk and went inside and drank some water, filling my bladder again. The object began to float again and the discomfort went away. The device fills so much better in a bladder that is not empty. Lou Lou girl

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    • #32
      Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

      Update. This is day 8 and my pain has gradually gotten better. When I started last Friday, my pain levels were at 6-9 on a scale of 1-10. I would feel what I refer to as the "blow torch". As time went on, it decreased to a bee-sting. I would experience the bee-sting off and on. Yesterday, my average pain was a 4 and so was my worst pain. I am not feeling the bee-sting so far today. I do feel "urge" as my bladder fills, but no sting. I am cautiously optimistic. In all honesty, this could be just a lull in symptoms like most of us experience from time to time. I am waiting to see if I have sustained improvement, not just 2 or 3 good days. They will remove the device next Friday. Today is May 2nd. I will update again in a couple of days. Optimal relief is supposed to be felt on day 14. Will see how this goes. By the way, I have heard talk at this research center that Taris (makers of Liris) are later going to start testing this in people for a month. I did hear that when this device is kept in for longer than two weeks, there is a chance of it sticking to the wall of the bladder. I think they call this "encrustation", or something like that. I am considering submitting my name for consideration in such a study. Anything just to have access to the treatment, if of course, this drug truly is working for me.LOL I hope the FDA will fast track, at least the two week treatment through. I hope they don't drag their feet on this. It would be wonderful if I could just walk away completely from the Oxycodone, the instillations (catheters, syringes, etc, etc.) My bedroom looks like a medical supply warehouse instead of a bedroom. Traveling with all of that stuff is a pain. Perhaps if I ask my doctor, he will consider working to bring that study here. The device that I have currently, is filled with little white tube shaped pellets. This could be lidocaine or it could be, I think they said anyway, that if it was the placebo, it was "lactose". I don't remember for sure. Whatever it is, it is made to look the same as the lidocaine powdered pellets. This way the doctor, the patient and the folks carrying out the study, can't tell whether the volunteer is getting the placebo or the real thing. Will update in a couple days. Lou Lou girl

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      • #33
        Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

        Thank YOU for the update. I'm super interested, as you know.

        I hope you don't get "encrusted" at any point.

        You know I really like Lidocaine and this could be a way out of the pain for many of us.

        Keep it up!! and keep updating us!!

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        • #34
          Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

          Originally posted by Clevsea View Post
          Thank YOU for the update. I'm super interested, as you know.

          I hope you don't get "encrusted" at any point.

          You know I really like Lidocaine and this could be a way out of the pain for many of us.

          Keep it up!! and keep updating us!!
          Will do. It wasn't long ago that I found myself browsing these forums and only gleaning scant information. Very vague stuff. I wanted to scream, "Come on ladies!! Give!!" LOL I knew there had to be many others out there wanting to know details. Knowing exactly how they feel, I'm trying to be as detailed as I know how. Lou Lou girl

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          • #35
            Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

            You're doing a great job and as far as this forum goes I've never seen it doing better than this past few weeks!!! Good information and great support. There is so much to learn here!

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            • #36
              Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

              Update for Saturday, May 3rd. Well, I have gone from what I describe as the blow torch (several days ago), then to the bee sting feeling for a couple days, then to "an almost not there at all" feeling yesterday. As baffling as IC can be, today I'm feeling kind of a fizzling feeling in the trigone area. It certainly is not as bad as the blow torch or the bee sting, but not as good as the "almost nothing at all" of yesterday. Took 5mg of Oxy and that seemed to kick this "fizzling" in the butt. LOL Kind of reminds me of how Alcazeltzer(spelt wrong) looks when it hits water. I feel this in the trigone. You know, "plob, plob, fizz, fizz. Oh what a relief it is." Only fizzling in the trigone is not a relief, but it is still better than the blow torch and bee sting. Hopefully, this will get better. Can't think of anything I ate or drank that could cause this irritation. Update if/when it goes away or gets worse. Still watching to see if there will be sustained relief. Lou Lou girl

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              • #37
                Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                Update for Sunday and for the first 4 hrs of Monday morning. I am experiencing the "almost nothing at all" feeling again. The "fizzling" from Saturday is no longer being experienced. Saturday's fizzling was only temporary. On a scale of 0-10, my pain levels of yesterday and this morning average about a 1. Yes, I am experiencing serious improvement. Having had IC for almost 26 years, it is very difficult to really believe this is not just a "lull". However, if this is a lull, it is the longest "lull" I have ever experienced. I still have 4 and 1/2 days left of the treatment before it is removed. If I did get the real Liris device, it still has 4 and 1/2 days to continue "improving" my symptoms. If I continue to experience this relief all the way to Friday and possibly beyond that, then I will know this is not an "unusually long lull", but Liris working its magic. I am very cautious about getting excited too soon. If I take a nose dive in the near future with my IC symptoms, then I'll know whether it was Liris or an unusually long lull. I'll continue to give up dates. Cautiously optimistic, Lou Lou girl

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                • #38
                  Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                  2nd entry for Monday. As the day went on I did experience some of that fizzling. It seems to ping pong back and forth between "hardly nothing at all" to "fizzling" in the trigone area. It is a marked improvement over the "blow torch" and "bee sting" feeling. That is a definite improvement. I can be thankful I have not been experiencing those. 5 mg of Oxy is able to handle the fizzling when it is occurring. I have noticed a dramatic decrease in my number of voids as well. Still wondering if I can attribute this improvement to Liris or just a lull in symptoms. I never really kept a day to day diary of levels of pain and number of voids, but I don't recall a lull ever lasting this long. So far, I wouldn't call this a "complete healing" but a definite improvement. Can't wait to see how I am doing on Friday (about 3 1/2 days away). That is when you are supposed to feel the best provided you did get the real drug. I would be over the moon with joy if the fizzling goes away entirely by then. As long as I do not experience the blow torch or bee sting again, I would probably conclude that I did get the Liris device. From things that I have read, an overall improvement of 65% was experienced in the past study. This would indicate to me that though Liris is not a 100% cure, it is a definite help. Keep in mind too that I have pelvic floor disfunction which does contribute to urethral burning. Though most of my problem is a ulcerated, scarred bladder, a part of it is pelvic floor disfunction. Liris only addresses the bladder lining injury. This may explain why I still have some remaining problem. I should probably start back on the pelvic floor exercises again. I have not been doing them for a long time. The doctor did say that the pelvic floor muscles were very tight. It may be that resuming those exercises will help stamp out my remaining problem, or perhaps by Friday, the fizzling may have resolved completely since I do have 3 1/2 more days of treatment left. Going to start those tonight. Maybe by going at this from both angles of my problem might help. We will see. The study requires you to still keep up with symptoms for a whole month after the device has been removed. After that I'll be given the real drug in the unblinded phase two part of the trial. Lou Lou girl

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                  • #39
                    Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                    Fantastic !!!!

                    I hear you trying to not be overly enthused but I'm enthused for you !!!

                    I'm very excited for this LiRIS to be a great pain killer for us.

                    I think this day-by-day report is doing you and I a lot of good!!

                    Keep it up------I'm checking daily.

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                    • #40
                      Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                      Clevsea, Well my fears have come true. My pain is up to a 6-7 yesterday evening, into the night and so far to day. I certainly hope that I did not get the real drug because this isn't working. I did eat a small amount of strawberries which are ok in moderation usually. As long as I don't make a habit out of it, I'm ok. So, I don't really know if I can blame this flare on that small amount, one time serving of strawberries, or attribute this to the not getting the real drug and all this time I have just been experiencing a "lull" in symptoms. IC is wacky and unpredictable. The only time I'm absolutely going to know if Liris works for me, is when we can quick messing around with this placebo mumbo jumbo and they give the real thing. I hope for better results in phase II. Lou Lou girl

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                      • #41
                        Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                        That's sad for you ........... but even if I used a ton of Lidocaine I still feel plenty of pain especially if I ate something I shouldn't eat. I have not had a strawberry since I knew I had IC. I sneak a little fresh tomato now and then because I got away with it twice but I shouldn't be sneaking them ever.

                        I've not eaten a banana or a strawberry in 2 years. I sometimes want to experiment with them.

                        Anyway, you're correct !!!! The sooner you get the real LirRIS the better or at least you'll know you're not on the placebo and that will feel good!!

                        Looking forward to that day for you!!

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                        • #42
                          Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                          Clevsea, Update. Went to my Primary Care doc and she checked my urine. She said there is nitrates in my urine. I could be developing an infection and this may be why my pain has increased so drastically. She is sending it out for culture and she should have the results on Thursday. Will let you know the results when I hear. Lou Lou girl

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                          • #43
                            Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                            Wednesday, Pain has subsided a great deal. My average pain is 1-2 today. Still waiting on my urine test results that "should" be in tomorrow. I think if this was an infection, my pain would be increasing and not decreasing. I suspect that the strawberries I ate caused a flare in symptoms. On the IC food list my urogyno gave me, it list strawberries in the "try in moderation" category. I looked again and noticed it specified to try the sweet kind, but avoid the sour/tart kind. I didn't know there was more than one kind of strawberry. I thought a strawberry was a strawberry. Maybe they mean "very ripe" strawberries are sweet and less ripened are the tarter ones. Who knows? I can't understand why they bothered me this time and didn't before when I ate them only occasionally. Oh well, it could be that I have received the Liris placebo and what I'm experiencing is just wacky unpredictable IC. I am just chomping at the bit to get to the unblinded phase II part of this study when I will know without a doubt that I got the real thing. I will get that in about 4 wks. During my 4 wk wait, I have to keep the electronic diary and record symptoms. Then they will insert the device with the real lidocaine. Lou Lou girl

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                            • #44
                              Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                              Update. This is May 8th, one day before I have the Liris device removed. I have said this before, but I repeat it just in case there is someone who "jumps in" at this juncture and begins reading and does not know that this is "a continuing saga". LOL Here goes.......I DON'T KNOW IF I GOT THE PLACEBO LIRIS OR THE REAL THING during this first phase of the study. I had a 50% chance of getting the placebo 2 wks ago. My pain scores went down and my number voids per day went down. The "blow torch" and the "bee sting" as I refer to them, have not occurred during the last 10 days during the two weeks of having the device, except during what I think was probably a flare from eating a small amount of strawberries. I still get the "fizzling" and some pain in the trigone. Not all the time, though. I am allowed 20 doses of Oxycodone per week. I still use this drug routinely. The question is, would my pain be worse if I had not taken the Oxycodone? Yes, it would. Here is what I "wanted/expected" to happen. I wanted to be able to stop the Oxycodone altogether. That did not happen. I wanted to be able to have intercourse with my husband. That did not happen. I am still very much aware that I have IC. I wished to forget that I had it. LOL My pain improved substantially, but still not enough to let go of the Oxycodone. While "fizzling" in the trigone of my bladder is much better than the "blow torch" and better than the "bee sting", the fizzling would keep me awake all night without a 5 mg dose of Oxy. I do notice that I have not had to take a 10 mg dose at all. I used to have to have that dose sometimes. Another question I have is, "Since I never recorded in a diary my voids, my pain levels, my void volumes, I honestly don't know if I might have experienced relief to this degree before trying this." I was also taken off my instillations one month prior to the trial and during that time, I did get worse. These twice daily instillations did help me without a doubt. I can't help but wonder if I had been allowed to continue using two of the drugs I use, (Solu-cortef for inflammation and heparin to help replace the bladder lining) and just omitted the Marcaine pain relief ingredient, if I could have seen an almost complete resolution of my IC. In taking me off those meds, my Oxycodone use increased. How much of this "improvement" can i attribute to the Liris device, if my use of the drug was more frequent because I had to make up for the loss of my instillations. I believe I might have seen a more substantial improvement had they only taken the Marcaine away, but these researchers wanted to know if the continuous lidocaine dose made things better for someone who was not instillations. That is why I was taken off them. I wished I could have begun the diary while on my instillations, then gotten off of them and not recorded any symptoms. Once the instillations were out of my system and no longer benefiting me and then been allowed to begin the diary after the device had been inserted, I would know better if the Liris device was an improvement over what my life was like when I was using 2 instillations a day. I won't really know because I did not keep a diary while I was on instillations. I wish I had. I know I had some good days on those instillations. I can remember being able to turn to those a majority of the time and not having to use Oxycodone nearly so much. I used to use about 90 five mg tablets per 10 wks. Now, I have to get them filled about every 5 wks. I guess what I'm trying to say is that I wanted to compare my symptoms with the use of instillations to my symptoms with Liris. While the researchers want to compare my symptoms while not on instillations to having the Liris device. I just want to know, does Liris make instillations no longer necessary? Does it decrease the number of times one must use Oxy? Will I ever be able to have intercourse again. When I get the real drug for sure in a month, I will be able to answer those questions. If the answer is yes to these questions is yes, I will consider the Liris device to be a "MIRACLE". I am reserving judgment until the 2 wk period is over after receiving the real drug. I hope I have not confused everybody and they understand what I'm trying to convey. LOL Lou Lou girl

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                              • #45
                                Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                                I understand what you're saying. It's complicated by being on Oxycodone for one thing.

                                Because you had to be on that and increase the dosage it could be why you went into a lower pain situation.

                                That seems to happen to a lot of us...............we get on 3 meds and then can't tell which one worked. Or we eat 3 different things and we wind up blaming the wrong food.

                                I can't wait until you're put on the real thing. I'm waiting right along with you!!!!!!!!!!!!!!!

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