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  • #76
    Re: LiRIS

    A year or two is not as long as I was thinking it might be. That is great. I remember reading the same thing in regards to the virus. I think it is the BK virus or something. I certainly found that very interesting too...thanks for sharing what you have heard Jubilee. I wish there was an easier way to find out what's going on half the time.
    Last edited by jvr; 04-05-2015, 12:19 PM.
    "Where there is hope there can be faith. Where there is faith, miracles can occur."

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    • #77
      Re: LiRIS

      I've always felt that some of this may be viral so I'm glad to hear there are researchers out there who also think that there is a viral component involved.

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      • #78
        Re: LiRIS

        Originally posted by jen74 View Post
        I know they last updated the clinical trials on the ICA website in November of Last year. They say the trial is ongoing, but who knows really because they are no longer accepting any people for the trials.

        The idea of LiRIS is good, but I think they are going to have to come up with a better system. From what I have read the device has to be inserted via a cystoscopy and two weeks later it has to be removed Via Cystoscopy. This seems like it would be Extremely expensive in the long haul as well as risky with having to have cystoscopy so many times with placement of this device and removal. I cannot imagine insurance companies covering this. I hope they would, but you know insurance companies are....
        Jen74, My bladder instillations are $800 a month and that is if I do one a day and not two a day. I have developed infections right and left with these causing more trips to the doctor and more tests and more antibiotics and more antifungle meds for the yeast infections. I stopped these instills for the trial. I had it inserted in the first phase and taken out. I had it inserted and taken out the second phase. I carried both of these devices in my bladder and did not develop even one infection. The amount of iodine he used was a lot. Given the expenses involved with instills, it may add up to being the same as Liris. I think had I had continued access to it, it may have healed me up for a good while where I did not need it so often. As far as infection Liris is better than instills. Also, I did hear that they were working on a more cost effective way of delivery into the bladder. It was some gadget that a doctor would use to insert it. I hope that works out. Lord, I wish the FDA would fast track this. It was wonderful. As far as I'm concerned they can put a heparin ring in with it and I carry them both inside at the same time. Lou Lou girl

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        • #79
          Re: LiRIS

          Lou Lou girl,

          Oh yes I agree with you 100% on the instills being more of an issue in terms of causing UTI's. I did bladder instills for over a year and got infections all the time. In fact I got one that lasted for months that would not leave! It was a nightmare. Plus, every time I got a UTI the doctor would only give me like 5 to 7 days of treatment and the stupid UTI would come right back. I ended up getting resistance to a few of the antibiotics because of this, I blame the urogyne for that.

          I think the Liris would be great in that respect. At least it would cut down on infections hopefully since you would not have to use a catheter all the time to instill the stuff into the bladder. The catheterizing is the problem. I know when I was dealing with the UTI's from doing the instillations I had 3 different doctors scold me and tell me I was hurting myself by having these instills done as I was just causing bacterial colonization in my bladder from the constant cathing. Of course all these doctors did not have IC either. I was in agony and needed relief! I finally did have to stop doing the instillations when I got the one UTI that just would not leave. I had to be on over 6 weeks of high dose antibiotics just to kill it. Ironically during that period on the antibiotics my IC got WAY better. I mean like 95% better. My bladder actually healed while I was on those antibiotics. I did really well staying on low dose antibiotic for 4 years. Unfortunately it stopped working so I am back in bladder hell for the last 9 months now.

          I really hope they will approve Liris and some of the other newer treatments they are doing trials with. I mean they have to come up some different treatment options for this disease. So far the only FDA approved treatment for IC is Elmiron and that medication only helps a very small number of people who have IC. It also has a ton of side effects that can be very bad( some even permanent). I am glad the Liris helped you. I mean if it can give you your life back then it is so worth it.

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          • #80
            Re: LiRIS

            Very interesting. I am kind of leaning towards thinking IC is caused by a bacteria, at least in my case and for those who got better when taking antibiotics. There could also be a viral component too though. I hope not though because viruses can be near impossible to kill. The best one could do is try and boost the immune system to where the body holds the virus at bay. There are anti- viral medications, they can keep the virus at bay, but in my opinion it is like chasing the virus around the block since it is near impossible to kill some viruses. At least with a pathogenic bacteria there is hope of being able to kill it off. Viruses are mean little Buggers and usually are next to impossible to kill without killing it's host which is what we are so that is not an option. I know there were some studies where they were saying IC may of been caused by the HSV6 virus. I know I have HSV6 as I was tested for it a few years back. A lot of people have HSV6 though and not everyone is sick so that is up in the air. Then it comes back down to our immune systems being dysfunctional which allows the virus to flourish.

            I think whether IC is caused by a virus or a bacteria the main issue is our immune systems. I think in order for a virus or bacteria to take hold in the body there has to be some sort of immune deficiency to begin with. My guess is that would have to be addressed as well. I hope they can figure it out one of these days. It is so complex.







            Originally posted by jubilee2 View Post
            Hi jvr,

            I'm not sure if the fda will speed up the approval process if they see such positive results with Hunner ulcer patients. My doctor did say we may see liris as an option in a year or two.

            Jen,

            I read in either the IC network newsletter or the ICA newsletter (can not remember which one) that researchers now believe the Hunner ulcer subset of IC is caused by a virus. I think this is great news for us and shows researchers are trying to find a cause. I would provide a link to the newsletter but I deleted my emails the other day.

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            • #81
              Re: LiRIS

              Jen 74, Please excuse me if you are the one I have read this from. I am on Oxycodone and my memory is not to good. I was reading from someone who posted about how they now believe Hunner's Ulcers are caused by a some kind of virus. It is the first I had of it and I'm going to research this topic. If they can identify a virus, invent something to kill it, it would seem like we would at least see an end to the ulcerative kind which is what I supposedly have. The doc pointed out an ulcer and scar tissue to me on the monitor while he was inserting the Liris device. Before this, I had been told that I had the peticheal hemorrage kind that 90% have, but it would appear not to be so, because there an ulcer was as plain as the nose on your face on the monitor. I hope, if a virus really does cause this form, that they find something to kill it (that won't kill me in the process LOL) I can just hear it, "Thus and such will kill it, but it also kills bladder cells and so on and so forth."
              Does it not seem that is the way things go. I know, I sound pessimistic. I have had this disease for 26 years and I'm just tired, I guess. Seems like I have to fight to get the drugs I need to deal with it. Just plane tired of fighting this pain, but I know God understands even if they, or anyone else does. Lou Lou girl

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              • #82
                Re: LiRIS

                Oh MY! I just read that it was jvr who told us about it in the above post. Gosh!! I guess everyone can tell how "out to lunch" I am. Forgive me. At least now I have of clue as to were to start looking. I bet if I PM Donna, she would know if it came from an article in the news letter or not. Please forgive me. I feel like the "Absent minded professor". LOL Lou Girl

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                • #83
                  Re: LiRIS

                  Hi Lou Lou,
                  Jill posted something on here about it and also the ICA mentioned it in one of their newsletters within the last few months I believe. I wish I could post the link. I need to learn how to do that. It's the Polymavirus BK. Apparently 11/15 patients tested positive in a small study. You can do a search on line and find the information pretty easily. I also just read an article written by Dr. Hanno within the last week talking about Cycloplorine and Hunners Ulcers. It said something like 68% of these IC patients responded well to that therapy. The article was in the Urology Times here on line. It's very interesting that they are thinking that Hunner's Ulcer patients are a different phenotype of IC with a potential different cause.
                  "Where there is hope there can be faith. Where there is faith, miracles can occur."

                  Comment


                  • #84
                    Re: LiRIS

                    Lou Lou girl,

                    Lol, don't worry, you are not the only one. It is interesting on a virus being a possible cause of IC. I don't know, but I kind of am leaning towards it being a bacterial source. I wonder if all types of IC can cause ulcers. Meaning that some women may not have ulcer at the time they have cystoscopy, but they can develop them later on down the road. It is kind of like gastritis. Gastritis is just the pre-cursor to a Gastric ulcer.

                    I totally get what you are going through. I have had IC since 2005, diagnosed in 2006. I have tried most all the treatments out there. Pain is a huge issue for me with my bladder. I am currently seeing a pain specialist and she is mentioning a spinal device that is kind of like Interstim except it works for pain. I do not know much about this device so am trying to learn more about it before I do it. My regular doctor gave me tramadol to take for the pain. I am super sensitive to medications and do not tolerate them well. Uribel works great for me but I am having huge effects because of it. It has wrecked havoc on my stomach and intestines and that was with only taking one capsule a day or every other day. I also have an issue with getting UTI's which is complicating matters. I really need to be on a low dose antibiotic daily to prevent them but cannot tolerate any of the other antibiotics they use. The uribel was also helping with preventing UTI but it looks as if I am not going to be able to take it due to the awful side effects.

                    I know you are taking pain medications, does your doctor prescribe them to you or do you see a pain specialist? Tramadol works for me some but it constipates me. Not like where it makes my stool hard, but it just slows me up so I hate taking it. But I need something as my pain is awful. The pain doctor I saw also gave me a script for a newer pain med called Nucynta. I have not tried it yet as I am trying to work with the tramadol.

                    I am with you, I wish they could find an answer to this awful disease. Life has been very hard and a struggle for me this past few years thanks to IC... I am sure you can relate.













                    Originally posted by Lou Lou girl View Post
                    Jen 74, Please excuse me if you are the one I have read this from. I am on Oxycodone and my memory is not to good. I was reading from someone who posted about how they now believe Hunner's Ulcers are caused by a some kind of virus. It is the first I had of it and I'm going to research this topic. If they can identify a virus, invent something to kill it, it would seem like we would at least see an end to the ulcerative kind which is what I supposedly have. The doc pointed out an ulcer and scar tissue to me on the monitor while he was inserting the Liris device. Before this, I had been told that I had the peticheal hemorrage kind that 90% have, but it would appear not to be so, because there an ulcer was as plain as the nose on your face on the monitor. I hope, if a virus really does cause this form, that they find something to kill it (that won't kill me in the process LOL) I can just hear it, "Thus and such will kill it, but it also kills bladder cells and so on and so forth."
                    Does it not seem that is the way things go. I know, I sound pessimistic. I have had this disease for 26 years and I'm just tired, I guess. Seems like I have to fight to get the drugs I need to deal with it. Just plane tired of fighting this pain, but I know God understands even if they, or anyone else does. Lou Lou girl

                    Comment


                    • #85
                      Re: LiRIS

                      Originally posted by jen74 View Post
                      Lou Lou girl,

                      Lol, don't worry, you are not the only one. It is interesting on a virus being a possible cause of IC. I don't know, but I kind of am leaning towards it being a bacterial source. I wonder if all types of IC can cause ulcers. Meaning that some women may not have ulcer at the time they have cystoscopy, but they can develop them later on down the road. It is kind of like gastritis. Gastritis is just the pre-cursor to a Gastric ulcer.

                      I totally get what you are going through. I have had IC since 2005, diagnosed in 2006. I have tried most all the treatments out there. Pain is a huge issue for me with my bladder. I am currently seeing a pain specialist and she is mentioning a spinal device that is kind of like Interstim except it works for pain. I do not know much about this device so am trying to learn more about it before I do it. My regular doctor gave me tramadol to take for the pain. I am super sensitive to medications and do not tolerate them well. Uribel works great for me but I am having huge effects because of it. It has wrecked havoc on my stomach and intestines and that was with only taking one capsule a day or every other day. I also have an issue with getting UTI's which is complicating matters. I really need to be on a low dose antibiotic daily to prevent them but cannot tolerate any of the other antibiotics they use. The uribel was also helping with preventing UTI but it looks as if I am not going to be able to take it due to the awful side effects.

                      I know you are taking pain medications, does your doctor prescribe them to you or do you see a pain specialist? Tramadol works for me some but it constipates me. Not like where it makes my stool hard, but it just slows me up so I hate taking it. But I need something as my pain is awful. The pain doctor I saw also gave me a script for a newer pain med called Nucynta. I have not tried it yet as I am trying to work with the tramadol.

                      I am with you, I wish they could find an answer to this awful disease. Life has been very hard and a struggle for me this past few years thanks to IC... I am sure you can relate.
                      My primary care doc prescribes the Oxy. She is running scared because of the DEA crackdown though. I am allowed to take 10 mg of Oxy three times a day and 4 in a emergency. Allowed no more than 180, 5mg tablets. Tramadol does not work on me. Lortab causes vomiting. Oxy is the one that works for me. Unfortunately, it is the "EVIL ONE" targeted most by the DEA. (The one everyone hears about that so many OD on, sell on the street, etc. etc.) I wish it was a different one my pain responded to, but that is not the case. Every time I go pick up my monthly RX, I have some sort of problem getting all the rx. They look me over, suddenly check the computer, at least 3 come look at it, etc. etc. Tired of being treated like a drug addict. If I can just find another way to get rid of the pain. like Liris, I will be much better off. Hurrying while typing this. Getting ready to go see my Urogyno. Wrote him a letter asking if he could somehow get me access to that treatment again even though it is not FDA approved. I think he has connections. He was able to get the Liris trial to come here. So maybe I can get access to it if I offer myself as a Guinea Pig. Gotta get ready and pull myself into some kind of shape for my appt. LOL Catch up later Jen 74 and thanks for the info jvr on that topic for Ulcerative IC Lou Lou girl

                      Comment


                      • #86
                        Re: LiRIS

                        Oops! I meant, "No more than a 180 tablets per month" Lou Lou girl

                        Comment


                        • #87
                          Re: LiRIS

                          Originally posted by jen74 View Post
                          Lou Lou girl,

                          Lol, don't worry, you are not the only one. It is interesting on a virus being a possible cause of IC. I don't know, but I kind of am leaning towards it being a bacterial source. I wonder if all types of IC can cause ulcers. Meaning that some women may not have ulcer at the time they have cystoscopy, but they can develop them later on down the road. It is kind of like gastritis. Gastritis is just the pre-cursor to a Gastric ulcer.

                          I totally get what you are going through. I have had IC since 2005, diagnosed in 2006. I have tried most all the treatments out there. Pain is a huge issue for me with my bladder. I am currently seeing a pain specialist and she is mentioning a spinal device that is kind of like Interstim except it works for pain. I do not know much about this device so am trying to learn more about it before I do it. My regular doctor gave me tramadol to take for the pain. I am super sensitive to medications and do not tolerate them well. Uribel works great for me but I am having huge effects because of it. It has wrecked havoc on my stomach and intestines and that was with only taking one capsule a day or every other day. I also have an issue with getting UTI's which is complicating matters. I really need to be on a low dose antibiotic daily to prevent them but cannot tolerate any of the other antibiotics they use. The uribel was also helping with preventing UTI but it looks as if I am not going to be able to take it due to the awful side effects.

                          I know you are taking pain medications, does your doctor prescribe them to you or do you see a pain specialist? Tramadol works for me some but it constipates me. Not like where it makes my stool hard, but it just slows me up so I hate taking it. But I need something as my pain is awful. The pain doctor I saw also gave me a script for a newer pain med called Nucynta. I have not tried it yet as I am trying to work with the tramadol.

                          I am with you, I wish they could find an answer to this awful disease. Life has been very hard and a struggle for me this past few years thanks to IC... I am sure you can relate.
                          I thought Nucynta looked familiar. My doc had tried me on it to see if it would be a good substitute for the Oxy, as she said it is not as problematic as Oxy and is easier to get at pharmacies. I feel like I'm in a tug of war every time I go to get the Oxy script filled. I did try Nucynta, but it I might as well have eaten a jelly bean. It did nothing for me. I should have known when she said it was not as hard to get, that that was code for "absolutely useless". LOL I try to keep a sense of humor because laughing is better than crying.LOL I hope that if you try it, it will work for you. Different pain meds work for different people. My doc had me enter a study and give several tubes of blood. It was a study to find out what is best for each individual. It turned out to be junk science. Almost everything it said would work best for me did not "work best for me". It only got one thing right. It did correctly identify which muscle relaxer worked best on me, but having tried several, I already knew what muscle relaxer worked best. I have been able to cut my Oxy use to 2 doses a day instead of 3. An infection that I had heightened my pain levels, so my bladder is finally settling down a bit. Lou Lou girl

                          Comment


                          • #88
                            Re: LiRIS

                            Originally posted by Lou Lou girl View Post
                            I thought Nucynta looked familiar. My doc had tried me on it to see if it would be a good substitute for the Oxy, as she said it is not as problematic as Oxy and is easier to get at pharmacies. I feel like I'm in a tug of war every time I go to get the Oxy script filled. I did try Nucynta, but it I might as well have eaten a jelly bean. It did nothing for me. I should have known when she said it was not as hard to get, that that was code for "absolutely useless". LOL I try to keep a sense of humor because laughing is better than crying.LOL I hope that if you try it, it will work for you. Different pain meds work for different people. My doc had me enter a study and give several tubes of blood. It was a study to find out what is best for each individual. It turned out to be junk science. Almost everything it said would work best for me did not "work best for me". It only got one thing right. It did correctly identify which muscle relaxer worked best on me, but having tried several, I already knew what muscle relaxer worked best. I have been able to cut my Oxy use to 2 doses a day instead of 3. An infection that I had heightened my pain levels, so my bladder is finally settling down a bit. Lou Lou girl
                            Jen74, Can you tell me anything more about this spine stimulator that works for pain? Lou Lou girl

                            Comment


                            • #89
                              Re: LiRIS

                              Hey Lou Lou girl,

                              The pain specialist I seen mentioned this as a treatment option but wanted me to try some less invasive things first ( medications and an acupuncture trial for pain). She said the spinal cord stimulator is similar to the interstim except for this one is specifically for pain, not urgency or frequency. I was trying to do more research on it to see if anyone with IC has had it done but have not found much info on it. I did find this write on online that gives a little description. Here is the link.


                              http://www.tameyourpain.com/Portals/...al%20Nerve.pdf

                              Comment


                              • #90
                                Re: LiRIS

                                Originally posted by jen74 View Post
                                Hey Lou Lou girl,

                                The pain specialist I seen mentioned this as a treatment option but wanted me to try some less invasive things first ( medications and an acupuncture trial for pain). She said the spinal cord stimulator is similar to the interstim except for this one is specifically for pain, not urgency or frequency. I was trying to do more research on it to see if anyone with IC has had it done but have not found much info on it. I did find this write on online that gives a little description. Here is the link.


                                http://www.tameyourpain.com/Portals/...al%20Nerve.pdf
                                Jen74, I just wondered if your Pain Management Dr. remembers that your pain comes from inside your bladder (BURNING) Pain being felt because nerves in your bladder that were never intended to come into contact with urine are being exposed to it. One thing that I find I must remind my many doctors of when they are suggesting therapies to me, is that my pain is a burning/stinging pain. Other pain IC patients feel, like the spasming, or contracting of the bladder (like it is freezing up like a stone) has only seldom happened to me. Others have described a headache in the pelvis. I have no idea what that feels like. What I find extremely irritating is that docs seem to just stamp everyone with the label "PELVIC PAIN". It really matters WHAT KIND of pelvic pain the patient suffers from when considering a therapy. I have also noticed (present company excluded) that many patients on this forum also fail to be specific when describing their pain. For instance, I would love to know if there is a single IC patient out there who was helped by Interstim that experienced a cessation of BURNING PAIN COMING FROM INSIDE THE BLADDER. I see folks all the time who say, "Interstim helped my pain." I want to say, "Well, that is wonderful. Now exactly, what kind of pain did it relieve?" I wonder how many patients like me, get blindly pushed through protocols and the doctor never considers whether a therapy is known to help the particular pain the IC patient is suffering from. My doc tried to get me to do interstim and I would not do it, because I have never seen even one person say that it helped them with the BURNING INSIDE THEIR BLADDER. I was scheduled to have pelvic floor botox shots, but I got myself to the physical therapist before it was to take place. It is a good thing that I did. She said that I had no knots at all, my pelvic floor muscles were extremely weak. She said that I'm a good candidate for pelvic organ prolapse. The botox shots are supposed to relax tight pelvic muscles. Botox would have been unnecessary and put me at more of risk of suffering a prolaspe. Another example of escaping an unnecessary procedure that would not have addressed my main problem. (Burning inside the bladder) You seem like a very thorough, detailed oriented person, so what I would like to know is if your Pain Management doc knows if this new spinal stimulator makes it so you cannot feel THE BIG BURN. If you read the article, it says "pelvic pain", but once again does not describe the exact pain this patient had. IC pain and pelvic pain are not adequate enough terms for me. Since I do not see a Pain Management doc, could you ask yours this very pertinent question when you see her again? I bet thousands of patients are put through risky procedures that do not apply to them and their specific pain. Thank you very much, Lou Lou girl

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