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

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  • #16
    Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

    Sharon, I just did the test once. I was suppose to get a second one but they pulled the trial before I could do the second round. When they began the trials again they only wanted new subjects.
    I had relief for about six months. You are right the Hunner's ulcers do return, but that is true of all the current treatments for Hunner's Ulcers.
    I wish you well and days pain free.

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    • #17
      Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

      I'm sorry Sharon I didn't see your second post before I answered. It has been a while but the process was fairly simple. They want to know your pain level. You will have to stop any pain medications before the trial. You will need to keep a journal of the number of times you urinate each day and your pain levels. The worst part for me was the insertion. But I would gladly do it again.

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      • #18
        Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

        signgal,

        Very curious about something. I have been on daily instillations for months. I use Marcaine, which is known to be longer acting than lidocaine. I have a fear that because I may be developing a tolerance to my instillations because they are not working as well as they once did, that a lidocaine drug may not work for me. I just wondered if you happen to have gone the "frequent instillation" route and then entered the LIRIS trial and found that it worked well, or did you never try very frequent instillations and this was the first time your bladder ever came into contact with the lidocaine drug during your trial. I'm dying to know the answer. If you did try the very frequent instillations and you experienced tolerance to them, or even, did not benefit from them at all and then did very well on the lidocaine "pretzel", this would give me hope that even though the instills are beginning to fail me, the lidocaine "pretzel" could still be a viable option for me. You know what they say, "When you use a drug too much, tolerance to the drug is often the result and it stops working." I just want to know if your bladder was exposed frequently to lidociane or marcaine routinely, but the lidocaine pretzel still worked. I'm a little bit worried, I won't respond to the pretzel because I've already "overused" the anistetic.

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        • #19
          Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

          Signgal, Still new and just recently started posting and I'm afraid I'm clueless sometimes as to how everything works on here. I clicked your name hoping to see a list of therapies you had tried. You know how sometimes when people post something, somehow automatically the list of therapies they have tried or are currently trying shows up. Well, I thought by clicking your name, it would show me whether bladder instillations were something you tried. I know there is someway to display that, but I don't know how to make that appear on my "profile", I guess you call it. I'm not the most computer saavy person.LOL I would like to make it so that when I post something, or if someone wants to click my name to see what therapies I have tried, they can see it. I don't know how to make that happen.

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          • #20
            Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

            Sharon, I believe that you would enter meds & therapies you have tried on your profile page. The reason you could not find my info is because I've never sat down and added it to my profile. I will start working on that and let you know when it is available.

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            • #21
              Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

              signgal,
              Did you see post #18? I had sent you two in quick succession. The first one was the most important, but you may not have noticed it, or thought you already read it. You only replied to the second one. The one just prior to my last one had some questions that I'm just dying to know. Thanks, Sharon

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              • #22
                Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                You're right Sharon. I didn't see this post. I did the clinical trial before I had instillations done. My urologist was not very excited about having a patient with IC. While he does know about it I think he doesn't like a patient he can't cure. Anyway, I was suffering so much and was not getting help from him so when I saw the trial I applied. I don't know how it would work on someone that has had many instills. I believe the best part of the LIRS Is that it rebel eases the medication over a two week period of time. I think that has to be better than the instill meds that you only hold for a short time.
                After the trial I think the urologist started to get the sense that I was really suffering. I have had two instills and will have the Hunner's Ulcers removed by the TURBT method in January. It is my hope that with that and the good results I have had with the PT I will be in a much better place. Good luck to you. Happy to hear that your PT is starting to help.

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                • #23
                  Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                  I take nightly instillations of Solu-Cortef (anti-inflammatory steriod) with Marcaine and heparin. I take an Ambien 5mg at night before going to bed. The Ambien just knocks me out so that I'm able to keep the instillation in my bladder for 5-7 hrs during the night. The Ambien just seems to by pass all the burning pain/frequency of my bladder (just kind of tells my bladder to SHUT UP!!) The instillations, after doing a few weeks of them nightly, used to kick in and work. Pain/frequency would be gone. Then I did not need the Ambien to sleep anymore. I had even been able to gradually scale back on the instillations from nightly, to every other night, to every fourth night, then 5, then to every 6 and 7, until the day I had a terrible flare start. I immediately started back on the instills, but I had a set back. I had an infection from daily cathing that I had dismissed as just being IC symptoms. It was allowed to fester and grow worse infecting my kidneys. This required 33 days of antibiotics which further inflamed my bladder. The nightly instills still have not kicked in and started working. I'm not giving up though. I did have these 2 factors thrown into the mix. Hopefully once all the hub bub settles down in my bladder, the instills will work, but I'm really scared I have become tolerant to them. Since I hold them in my bladder all night, I can't really say they don't work because "I just tinkle them right out." In my case, I hold them in for several hours thanks to Ambien. However, I do have to consider that they are being diluted with urine dripping in from the kidneys all night. With Liris, it continually spits out a steady dose, I guess keeping up with the flow of urine. So, I would be getting a steady "concentrated fresh dose" for two weeks. That might make a difference. I sure hope so. I don't wish to live a life on pain killers and sleep aids. I'm am praying that Liris will be "my miracle". It would be wonderful to stop the Oxycodone and Ambien. My primary care doc prescribes those for me. My urogyno has written to her to advise her that she stop these medications. He is an idiot and my PC doc agrees with me! He only has a "clinical" knowledge of IC. He doesn't really think past that and put himself in my shoes. He doesn't really believe that my pain and sleepless are very severe. He is inexperienced with IC and I'm his only IC patient that has to take nightly instills. You would think that with all the efforts from the IC community to educate clinicians on how devastating IC is, that we would be flooded with compassionate, understanding medical care providers. My urogyno has actually contradicted me when I am telling him what the side effects I've experienced on various therapies and contradicted me on the what my symptoms are and the severity of them. On these points, I'm am the expert, not him. That is when he is supposed to close his mouth and open his ears. If it were not for the Liris trial coming up and his intention to get me into it, I would find another doctor. I was warned by another doc that he was this way and he was right. Fortunately my PC is a godly Christian lady who listens and really cares about the patient and their well being. She spends about 30 min. with me at every visit. There is not even a smidgeon of arrogance with her. There is alot arrogance with my urogyno. I find it nauseating and I dread my appts. with him. Thanks for listening and responding. It is good to talk with others who can identify.

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                  • #24
                    Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                    I am very excited that you will be undergoing a trial. I hope that it helps with your suffering.
                    In regard to your urologist I am having the same problems and feel he is not committed to finding the best treatment for me. I live in Sarasota Fl. Does anyone know of a urologist who truly understands the disease?

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                    • #25
                      Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                      Originally posted by lucycash View Post
                      I am very excited that you will be undergoing a trial. I hope that it helps with your suffering.
                      In regard to your urologist I am having the same problems and feel he is not committed to finding the best treatment for me. I live in Sarasota Fl. Does anyone know of a urologist who truly understands the disease?
                      I wish I could see Dr. Robert Moldwin in NY. They actually have a place that treats IC patients only!!! You don't have to play "second fiddle" to all the female reconstructive surgery patients. IC patients are "second class citizens" because we don't typically need surgeries that cost thousands of $. What is laughable is my urogyn got the "most compassionate dr. award. Yes, I don't doubt that he is "very compassionate" towards the women who are getting these expensive surgeries!! I can just hear it, "May I fluff your pillow for you? Need a foot rub? How are you pain levels?" Bla, Bla, Bla. Then it is, "By the way, could you take the time to go on Vitals and give a brief account of your experience with us? It makes me sooo mad that this guy dismisses my pain. Their is a Dr. Evans, I think his name was. He is at Lake Forest Baptist Hospital in NC. I thought about driving there to see him. He actually spends 2 hours with his patients. I think that is over kill, but it is better than someone who just does not listen and rushes you out the door and leaves you wondering what you just paid him for. I'll pray for you. I'm glad my fate is not in the hands of an uncaring doctor, but in the hands of my Heavenly Father who will never leave me nor forsake me. I hope you get the care you need. Sometimes I just breakdown and cry and tell God all about it. Where is the empathy and compassion that should have motivated these guys to become doctors. How can they turn there backs on the suffering?

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                      • #26
                        Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                        Well, I'm in the Liris study. I had the device inserted yesterday, Apr. 25 th. I don't know if I was given the placebo or the real thing. In about 6 wks. I will definitely get the real drug. That is the second phase when every participant will know that they got the real thing. While they had the camera in my bladder, I found out something I did not know. I always thought that I had the pin point glommeration kind of IC that 90% have. The doctor pointed out that I had Hunners legions as well. This is the kind that 10% of IC patients have. I have both kinds. He also pointed out some scarring. Anyway, I had been rather disappointed in the months leading up to this that there were not very many IC patients sharing their experiences with the experimental Liris device. If I'm disappointed, I know there must be a lot of ICers who are also disappointed about this. So, I'm going to share my experiences with this trial in detail with everyone. I was given an electronic diary to log voiding times and how many times I took Oxycodone (20 doses are allowed per week max) You must pick 2 days out of each week to deprive yourself of any pain meds. I guess this is so that you can give a true account of your actual pain levels. On a couple of days they ask you to log void volumes in a toilet hat. They also ask about your pain on a scale of 1-10. They also ask you to answer questionaires. This electronic diary is fairly easy and has a number you can call if you have questions 24/7. They also only ask you to record void volumes during the day and not at night when you are half asleep. Logging void times in the middle of the night is very quick and easy and allows you to get back in bed quickly. My doctor has been especially wonderful and pushed hard to get this study here. I am very grateful to him for getting me into this study. When it was inserted via cystoscope, I felt only very mild slight discomfort not really worth mentioning. I was surprised. When I had one back in 98 it hurt very bad. I wonder if it just depends on the skill of the doctor or if they have made improvements with the cystoscope or the lidocaine jelly they inject into the urethra. I did take 10 mg of Oxycodone one hour prior to the procedure which probably helped. 24 hrs. after having this procedure, I cannot yet tell any difference in symptoms or pain levels. The device is left in for 2 wks. I don't think anyone can expect results this quickly anyway. The device is tolerable. I do fill like there is something in there, but it is not a very bothersome sensation at all. I will give up dates from time to time. I will say, for those of you who have very severe cases of IC who are wondering if this will actually help patients in this category, that my symptoms are severe. I have not worked since I was 19 back in '88 when this disease first struck. I have a lot of burning in the urethra/trigone area and my urgency and frequency are unreal. This has had a huge negative impact on my life. I cannot even have intercourse with my husband. Anyway, from time to time during this trial, I will give updates on improvements or the lack thereof. Don't lose hope if I don't improve because I could very well have gotten the placebo in this first phase. It is the second phase that I'm guaranteed to get the real thing. I'll continue to post up dates. If I improve, I will post about how long I experienced these improvements after the device is removed. I am detailed oriented so I probably won't leave out anything. If anyone should have a question that I did not address, please feel free to send me a message and I will answer your question to the best of my ability. Lou, Lou girl

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                        • #27
                          Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                          Up date on my experience with the Liris device. Remember to keep the following in mind as you read. I am only in the first phase and don't whether I received a placebo or the real drug. This is day five after having the procedure done. April 30. My pain when I started the study ranged from a 6-9 on a scale of 1-10. I describe my really bad pain as a "blow torch" in my bladder. I awoke at 4:00 a.m. with what I call "a bee sting" in the trigone of my bladder. A marked improvement over the "blow torch". At 8:00 this morning, the "bee sting" can barely be felt. Another marked improvement. We will see if this is one of those once in a blue moon "lulls" in my IC, or the Liris device working its magic. If there is sustained pain relief that goes on for days, I'll know it is the device working. If I get hit with real bad bladder pain and have to resume my Oxycodone use, then I'll know it was only a lull. Will give another update later when I know which it is. Lou Lou girl

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                          • #28
                            Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                            Originally posted by Lou Lou girl View Post
                            Up date on my experience with the Liris device. Remember to keep the following in mind as you read. I am only in the first phase and don't whether I received a placebo or the real drug. This is day five after having the procedure done. April 30. My pain when I started the study ranged from a 6-9 on a scale of 1-10. I describe my really bad pain as a "blow torch" in my bladder. I awoke at 4:00 a.m. with what I call "a bee sting" in the trigone of my bladder. A marked improvement over the "blow torch". At 8:00 this morning, the "bee sting" can barely be felt. Another marked improvement. We will see if this is one of those once in a blue moon "lulls" in my IC, or the Liris device working its magic. If there is sustained pain relief that goes on for days, I'll know it is the device working. If I get hit with real bad bladder pain and have to resume my Oxycodone use, then I'll know it was only a lull. Will give another update later when I know which it is. Lou Lou girl
                            THANK YOU, THANK YOU, THANK YOU, for being willing to do this. It will help a lot of us, maybe all of us. I love Lidocaine and I use it a lot. That's why I'm glued to this thread and following what happens with you. Clinical studies are not easy to comply with so allow me to give you another THANK YOU !!!!!!!!!!!!!!!!!!!!!!

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                            • #29
                              Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                              Originally posted by Clevsea View Post
                              THANK YOU, THANK YOU, THANK YOU, for being willing to do this. It will help a lot of us, maybe all of us. I love Lidocaine and I use it a lot. That's why I'm glued to this thread and following what happens with you. Clinical studies are not easy to comply with so allow me to give you another THANK YOU !!!!!!!!!!!!!!!!!!!!!!
                              Your welcome and know how you feel. Lou Lou girl

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                              • #30
                                Re: LiRIS News! TARIS launches Second Phase 2 Clinical Study for Interstitial Cystiti

                                I thought I'd add a couple things I thought would be of interest. I was the second person to be dosed at this location. The first lady that was dosed, was having hers removed at the time I was having mine put in. She said that she felt increased burning for the first 3 days and then it gradually improved each day. Her pain went from a 9-1 on a pain scale of 1-10. She believes she received the real drug. I don't know her and I doubt I'll see her again unless our appointments coincide again. Just thought I'd throw that out there. Friday, that is "May 1st", I have an appt. with the research team. That would be day 8. They will probably ask me a bunch of questions at that time. I am supposed to give more blood and urine samples. They are monitoring how much lidocaine is found in the blood. (How much is absorbed systemically.) The following Friday, May 9th is the day that they will take the device out. I will update again Friday (the first) and if improvements or lack thereof are experienced between the 1st and the 9th, I'll post about it good or bad. Then when the second phase of the trial begins, where I get the real thing, I post in detail about that too.

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