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  • #46
    Re: LiRIS

    Hi, I hope the treatment goes well for you. Because my biggest complaint is usually frequency, it did not help me with this very much. I hope it goes better for you. I am very glad that you are stepping up and giving this a try. Research always needs volunteers to come forward and not many do; fear, distance, etc. Let me know how it goes for you as you take this step.

    Comment


    • #47
      Re: LiRIS

      Superbussell2, The exact thread is "Liris News! Taris launches second phase 2 Clinical Study for Interstitial Cystitis." Started by Jill on 4-2-13 Post #26 is where the diary begins. There are a few people who post questions or comments intermittently through the diary and I answer back. In answer to your question about getting the word out, a friend suggested I contact my Senator or Congressmen. Having had to contact those individuals before on another matter, and getting a "response letter" to my concern, showed that my original letter to them must have hurriedly been barely scanned over by someone other than to the Senator/Congressmen I sent it to. It also showed that very important details had totally been skipped over and the response letter didn't even address my concern at all. It was a big waste of time to put it bluntly. I honestly don't think they even care about anything until election time rolls around. Perhaps you should ask Jill the question you asked me. She has contacts that I don't. She may have some ideas. She pulled the IC Network together, maybe she could help advise you better than I could on how to "get the word out" and press for FDA approval of the Liris device. Here's hoping, Lou Lou girl

      Comment


      • #48
        Re: LiRIS

        Hi,
        Do you know if this has helped IC patients without ulcers too? This sounds promising. I wonder how long before it would be on the market...
        Jill
        "Where there is hope there can be faith. Where there is faith, miracles can occur."

        Comment


        • #49
          Re: LiRIS

          jvr, I have glommerations and ulcers. I did not know I had ulcers until he went to put the Liris device in. Hydrodistentions (2 of them) the docs said I had only glommerations, then the regular cystoscopy revealed I also had ulcers. I bet it works on both kinds. Lou Lou girl

          Comment


          • #50
            Re: LiRIS

            Sounds like you had good success with it! ☺ I hope we get an update on the status of it very soon!
            "Where there is hope there can be faith. Where there is faith, miracles can occur."

            Comment


            • #51
              Re: LiRIS

              Originally posted by jvr View Post
              Sounds like you had good success with it! ☺ I hope we get an update on the status of it very soon!
              I can give folks an update. The guy that invented the device up and sold the liris device up and sold it to another company. My doc said that the company can either shelve it, or start their own research study, or go off of what has already been done. I heard that they were "cherry picking" and only wanted good results reported. Well, I don't know about all that. I do know that I and some others greatly benefited. I was off Oxycodone for 15 days after being treated with it. Some folks complained that the device was not tolerable and began asking for pain meds. The rules stated that if you were already on pain meds, you could have them, but those who had not already been prescribed them could not have them. I will say that pain meds are probably needed for some folk during the time they carried the device, but after treatment I enjoyed 15 pain free days. The pain meds are probably the reason that I could carry the device without pain. Of course I don't know that for sure because I never tried the to carry the device without pain meds. That is the last I have heard on it. I want them to add a heparin prezel in addition to the lidocaine one. I would be a willing guinea pig. I won't to know RIGHT NOW if we could have what amounts to being an entire instillation that stays in your bladder for two weeks and then it removed and replaced and removed and replaced and so on. What would be the results on me having had those angry nerves in my bladder silenced for 6 wks, or 8 wks and then given a span of time when I did not have it in, if the healing might last longer than 15 days. I know it is wishful thinking, but I would be over the moon with joy if this could kick IC's butt forever. What would happen if those nerves were shut off for months? I would volunteer to do it for free. Lou Lou girl

              Comment


              • #52
                Re: LiRIS

                That's interesting. I sure hope they continue on with the study. That's funny you mention a heparin pretzel! I was thinking the same thing. I bet that would be so helpful for many! I wonder if they have seriously considered that at all...
                Jill
                Last edited by jvr; 02-21-2015, 12:46 PM.
                "Where there is hope there can be faith. Where there is faith, miracles can occur."

                Comment


                • #53
                  Re: LiRIS

                  I imagine if anyone really wants to get it up and running eventually for market the 'pretzel' could possibly be used as a vessel for all sorts of different medications. Wouldn't that be great?

                  Comment


                  • #54
                    Re: LiRIS

                    I so hope this passes FDA approval. I'm tired of seeing things fail in clinical trials...
                    "Where there is hope there can be faith. Where there is faith, miracles can occur."

                    Comment


                    • #55
                      Re: LiRIS

                      I think this device seems like it could cause a lot of issues long term ( infection from foreign body being inside bladder). I mean I could see it being helpful for people who have had good luck with bladder instillations using lidocaine. I just don't see this being a good long term treatment at all. They need to look into a systemic treatment in my opinion. I also think a lot of women would be irritated having something inside the bladder like that. Hope they look into a better treatment for IC than this....

                      Comment


                      • #56
                        Re: LiRIS

                        I'll take any bandaid that helps until they figure more out..lol. I think they are looking at it being a systemic issue thankfully. It is pretty amazing that it healed ulcers in 5 out of 6 patients. I think there is definitely a place for this as an added treatment for IC...
                        "Where there is hope there can be faith. Where there is faith, miracles can occur."

                        Comment


                        • #57
                          Re: LiRIS

                          Originally posted by jen74 View Post
                          I think this device seems like it could cause a lot of issues long term ( infection from foreign body being inside bladder). I mean I could see it being helpful for people who have had good luck with bladder instillations using lidocaine. I just don't see this being a good long term treatment at all. They need to look into a systemic treatment in my opinion. I also think a lot of women would be irritated having something inside the bladder like that. Hope they look into a better treatment for IC than this....
                          This was an amazing device and I know this could be very good. The FDA needs to stand aside. It actually healed damage (ulcers) HEALED THEM. That is something. The ones who did poorly are strongly suspected to have gotten the placebo. My doctor is friends with them and I really believe all my doctors patients did well because we got the real thing and the other docs there got placebos for their patients. My doc was the one that pushed to have this come here. I had my ulcer when I started and after being treated for 2 weeks, the doctor and I noted that it was gone. Women that entered the study without pain meds did badly. Some admitted to not drinking enough fluid so that it would float comfortably. When I drank fluid, I could not feel it. If I exercised and got dehydrated, I could feel it laying in the bottom of my bladder. After exercise, I drank water and took care of it. I had it inserted and taken out and had it inserted and taken out again. I developed no infection and I'm very susceptible to them. It got me off pain meds for 15 days. That is no small feet. About instillations and people not being helped by them, I would like to say that it took 26 daily consecutive bladder instillations to stop my pain. Often, folks give up on them because the doctor will only let them have 3 of them a week or less. Now I get them 2 a day. My doctor started me on them after I complained. I kept telling him I need more, no MORE!! Those instills were not going to work on me given once every 2 weeks. I fought for them and my life would be unlivable without them. The liris device is like having an instill 24/7 to get those nerves calmed down. Some how letting the nerves calm down for a lengthy period of time caused the bladder wall to heal. Folks, if instillations don't work on you, then you might need to try them more often. Also the cocktail being instilled has an impact as to whether it works on you. My doctor uses Marcaine, not Lidocaine. Marcaine is a longer acting drug. That is really important. Solucortef helps inflammation and last but not least is heparin. You may need a different cocktail if it is not working. Ask the doctor to change the cocktail to suit you. If you get chronic infections, they can add an anti biotic. Find a doctor who is willing to work for you and experiment with you. Of course if your pain is from PFD, then it won't work for you. If your pain is being caused by tissues outside your bladder, then it won't work for you. But about this Liris Device, if you got a new one inserted every two weeks for a few months, I wonder what might have happened. Infection would be more of problem if you didn't get a new one every two weeks. One girl that was with me in the Liris device actually said that she got most of her relief during treatment with the device inside her. When they took it out, the relief stopped. For me my real relief began after they took it out. The two weeks after were bliss for me. My bladder never felt better. It just depends upon the person. I would be willing to carry two devices, one with heparin and the other MARCAINE not Lidocaine. Lou Lou girl

                          Comment


                          • #58
                            Re: LiRIS

                            I definitely think they should come out with the device, even if it is just to help with the pain of this disease. I just do not think it will work for everyone and may even irritate some. I wish they would come up with something that would target the whole body systemically because IC is definitely more than just the bladder. There is something else going on in the body that is letting the bladder be damaged, something with the immune system in my opinion and with bacteria/pathogens.

                            I actually did bladder instillations for over a year straight. I had them done in the office and at home. They did help me at first, but then they stopped and the infections started. I did many concoctions too. I used Marcaine and it was awful. It gave me awful urine retention. Lidocaine was WAY better for me. Unfortunately the infections made doing the instillation very counterproductive. that and the fact they were not helping as they use to it was not worth the pain and frustration at that point to keep going with them. I had two different doctors tell me I needed to stop doing them as well. I am glad some people get relief from them, I mean I am all for anything that can help the pain.

                            I also would like to see what the long tem effects of having this in the bladder are. How long did they do the study on this? I know for me, I am very sensitive to chemicals and such. I also have a bridge ( crown) on my teeth and they definitely do irritate my gums. The dentist said that it will do that sometimes because your body see's it as a foreign object and is going to try and reject it causing inflammation around the area. I wonder if the Liris would eventually do the same thing to the bladder?

                            My IC is pretty bad and my worst issue is severe pain. I am always surprised when I hear ladies on here saying they are on pain meds, and some of them are heavy duty ones like I gave my mom when she was in hospice at home dying for cancer pain! I have yet to find any doctors who are willing to prescribe these types of meds. I wish they would take our pain seriously, but they do not sadly. In any event, I am all for anything that will help pain. I just wish the researchers would put the time into finding a cause for IC instead of all the Band-Aids they use to treat it that usually only work for a small percentage of people. They need to really look into a cause.










                            Originally posted by Lou Lou girl View Post
                            This was an amazing device and I know this could be very good. The FDA needs to stand aside. It actually healed damage (ulcers) HEALED THEM. That is something. The ones who did poorly are strongly suspected to have gotten the placebo. My doctor is friends with them and I really believe all my doctors patients did well because we got the real thing and the other docs there got placebos for their patients. My doc was the one that pushed to have this come here. I had my ulcer when I started and after being treated for 2 weeks, the doctor and I noted that it was gone. Women that entered the study without pain meds did badly. Some admitted to not drinking enough fluid so that it would float comfortably. When I drank fluid, I could not feel it. If I exercised and got dehydrated, I could feel it laying in the bottom of my bladder. After exercise, I drank water and took care of it. I had it inserted and taken out and had it inserted and taken out again. I developed no infection and I'm very susceptible to them. It got me off pain meds for 15 days. That is no small feet. About instillations and people not being helped by them, I would like to say that it took 26 daily consecutive bladder instillations to stop my pain. Often, folks give up on them because the doctor will only let them have 3 of them a week or less. Now I get them 2 a day. My doctor started me on them after I complained. I kept telling him I need more, no MORE!! Those instills were not going to work on me given once every 2 weeks. I fought for them and my life would be unlivable without them. The liris device is like having an instill 24/7 to get those nerves calmed down. Some how letting the nerves calm down for a lengthy period of time caused the bladder wall to heal. Folks, if instillations don't work on you, then you might need to try them more often. Also the cocktail being instilled has an impact as to whether it works on you. My doctor uses Marcaine, not Lidocaine. Marcaine is a longer acting drug. That is really important. Solucortef helps inflammation and last but not least is heparin. You may need a different cocktail if it is not working. Ask the doctor to change the cocktail to suit you. If you get chronic infections, they can add an anti biotic. Find a doctor who is willing to work for you and experiment with you. Of course if your pain is from PFD, then it won't work for you. If your pain is being caused by tissues outside your bladder, then it won't work for you. But about this Liris Device, if you got a new one inserted every two weeks for a few months, I wonder what might have happened. Infection would be more of problem if you didn't get a new one every two weeks. One girl that was with me in the Liris device actually said that she got most of her relief during treatment with the device inside her. When they took it out, the relief stopped. For me my real relief began after they took it out. The two weeks after were bliss for me. My bladder never felt better. It just depends upon the person. I would be willing to carry two devices, one with heparin and the other MARCAINE not Lidocaine. Lou Lou girl

                            Comment


                            • #59
                              Re: LiRIS

                              Hi Lou Lou,
                              Has your IC specialist mentioned when he thinks we might hear more about what the new company will do with it? It sounds like your doctor has a little more of the inside scoop. I think phase 2 is complete? I was looking at an above post where you mentioned that your doctor was hoping it would be approved 2015. Wouldn't that be amazing!
                              Jill
                              "Where there is hope there can be faith. Where there is faith, miracles can occur."

                              Comment


                              • #60
                                Re: LiRIS

                                Originally posted by jvr View Post
                                Hi Lou Lou,
                                Has your IC specialist mentioned when he thinks we might hear more about what the new company will do with it? It sounds like your doctor has a little more of the inside scoop. I think phase 2 is complete? I was looking at an above post where you mentioned that your doctor was hoping it would be approved 2015. Wouldn't that be amazing!
                                Jill
                                No. The inventor through up his hands over some dust up that happened here with docs at my hospital. He sold Liris to another company for 10 million and has not been heard from.My doc said the new company can do one of three things, shelve it, start up the studies using the other company's information collected so far, or start all over with their own. Jill Osbourne said they won't shelve it. I bet Jill will be one of the first to know when more news about it comes out.

                                Lou Lou girl

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