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  • Lou Lou girl
    replied
    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

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  • jp
    replied
    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.

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  • jubilee2
    replied
    Re: LiRIS

    I completely agree with you Superbussell we need to get the word out that some of us are suffering and need a treatment, like yesterday. Marcaine works great for me too for only as long as it's in my bladder.

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  • Superbussell2
    replied
    Re: LiRIS

    I am starting the LiRIS trial next week. I would like to read your diaries but dont know how to find them. I really think this "pretzel" can make a huge difference for me. I am just upset that if it works like I think, i will have to wait a long time for fda approval. How can we get the word out so as many of us try it so it gets approved faster, do you think? I would love to hear about your experience! Marcaine and lidocaine treatments work great for me but wear off in 4-8 hours. Thanks for any info you can give me!

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  • Lou Lou girl
    replied
    Re: LiRIS

    Originally posted by Lou Lou girl View Post
    My doctor said that he is hoping/thinking that this could be FDA approved in 2015. Jill said they might "fast track" this through. I hope and pray for that. Lou Lou girl
    I post a "diary" of my experiences as I went through both phases of the trial under a thread started by Jill. I believe the thread is entitled, "Taris Biomedical launches phase II trials" or something like that. It is everything you want to know about the device. It is long and it is a roller coaster ride with ups and downs. I think, but not sure, that the "diary" begins with post #26 (twenty something anyway). It is very very detailed. Sensations, pain, pain relief, insertion and retrieval of the device, when it started working, comments about my fellow participants experiences, size of the device, etc. etc. are covered. Lou Lou girl

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  • Lou Lou girl
    replied
    Re: LiRIS

    Originally posted by floridamom View Post
    How great to hear you have had success with this pretzel. I have been following it over the years, as word has grown about it. I am most definitely hoping to get to use it, but do you have any idea if & when it would be out for users??? Im so hopeful that this will work on me, just based on how it works.
    Thanks much!!
    My doctor said that he is hoping/thinking that this could be FDA approved in 2015. Jill said they might "fast track" this through. I hope and pray for that. Lou Lou girl

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  • floridamom
    replied
    Re: LiRIS

    How great to hear you have had success with this pretzel. I have been following it over the years, as word has grown about it. I am most definitely hoping to get to use it, but do you have any idea if & when it would be out for users??? Im so hopeful that this will work on me, just based on how it works.
    Thanks much!!

    Leave a comment:


  • Lou Lou girl
    replied
    Re: LiRIS

    I am currently in the newest Liris trial. They inserted the device April 25,2014 . This was the first phase. I have been living with what I call the "blow torch" in the bladder. This required frequent use of Oxycodone. I was taking two instillations a day before the trial, but I had to get off of them for the duration of the trial. Without my instillations, my oxycodone use increased to make up for the lack of them. Well, I have experienced a miracle with the device. The "blow torch" has ceased. I have not taken Oxycodone in 8 whole days. The night time frequency is still a problem. I use Ambien and get up about 4 times a night to pee. That is actually an improvement over what it used to be when I couldn't get insurance because of the pre-existing condition. I used to get up 3 times in an hour all night long. The night time voiding was better while on the bladder instillations. I belief that once Liris comes on the market, I will use the lidocaine pretzel for pain relief. I will add instillations of heparin (to replace bladder linning) and the Solu-cortef for inflammation. I will no longer take the Marcaine part of my instillations since the lidocaine pretzel would handle that part of it. I believe that I would get the phenomenal pain reduction with the pretzel and improved nighttime voiding with heparin and solu-cortef. I have just a slight little feeling of discomfort in the trigone of my bladder now. I just use Ustell caps (pill that makes urine turn blue) to handle the last little bit of remaining pain. I am happy to be off the Oxycodone. That is soooo fatigueing to use. It also has the potential to really harm the user. I am glad that Liris has make it possible to ditch this drug. I simply can wait for this to get FDA approved. Lou Lou girl

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  • allisun13
    replied
    jp

    Thanks for your replies!

    It is so frustrating b/c it seems likely clearly there is something at the root of this - sometimes I feel like help is just barely beyond my reach. Like I can see it but can't reach it. I often times find myself thinking that there is no way that this can be my reality. 35 years old w/ this chronic condition. It's sad. I am grateful for the good days and definitely when the good days are here don't dwell on it but the bad days do wear on me. I am sure you can relate.

    It does sound like it's a deteriorating thing and that over time it does get worse. I've only had it for a miserable year and 5 months. I've had no remission during that time.

    Have you heard about Candida and Body Ecology in relation to CFS? Just curious if you've tried that route at all. I am not sure what to believe anymore. So many ideas out there but if doctor's don't know it's hard to believe that it's as simple as something like. Although I don't think Candida is a simple problem to fix. But here we both are yet again on antibiotics - which supposedly feeds this viscious cycle.

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  • jp
    replied
    Allisun13

    I looked at your meds, and, yes, I have taken all of them, and the ones that did you no good, didn't for me either. I have taken Atarax for years, antihistimine, still do. glad you only have to take a small amount of valium. when I took Klonopin for six years, I, also, was only have to take a quarter tab. at night, but now, since I only take it once in awhile, I have none built up in my system, so I take 1mg.

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  • jp
    replied
    Allisun

    I forgot to say how many times I get up. the least is three, but it can go six or more times. It didn't use to be this way back in the begining, or at least for the first 18 years or so. Then my real complaint was pain, and urgency only occasionally and never at night. Now, not so much pain, but tons of urgency. I have no idea why this has switched, or is a result of having had this thing for so long and maybe it progresses to more urgency the longer you have it.

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  • jp
    replied
    No problem with questions

    Hi, Allisun13,

    I have had IC since 1989. I have been on Elmiron since it inception. I guess it works; who's to know since i have been on it for such a long time.

    I got a major UTI after they took the pretzel out this last Tues. I am still on the antibiotics. I think my bladder had just had it with five cystocopys in the last two months.

    I also have CFS so fatigued and sick I feel often; don't know if it is related to IC, but most probably. IC does wear one out. How could it not??!!

    Since CFS is suspected of being a brain disease, perfumes, etc, affect me greatly. Again, could be a part of the same package. REsearcers are looking at IC as maybe being an autoimmue disease, may be part of a larger, ongoing virus that attacks a much grreater part of the body then just the bladder?

    Sure am looking forward to the day when alot of these major illnesses that lay in no-man's-land are finally found to be this or that cause. Will be a great day.

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  • allisun13
    replied
    jp

    one more thing - if you are getting up a lot at night have you tried Vistaril? It's an allergy medicine. When I do take it I usually don't get up at all. I have to take it outside of the capsule. I pour it on my tongue and drink it down w/ water. Since it's an antihistimine you shouldn't take it with certain other meds but it does help. It also helped me get through the pollen season here.

    Another thing if you can tolerate it is oxybutynin at night. It calmes down the urgency and if you take it when you go to sleep you can sleep through the yucky side effects. It could help you sleep also.

    I get the lowest dosage prescribed to me for all of this stuff and almost can never tolerate even a half of the dose. I feel like a crazy crack head or something breaking the pills into tiny pieces but I can only take an 8th of a valium and oxybutynin have found that is all I need most of the time anyway.

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  • allisun13
    replied
    to JP again

    How many times do you get up a night now? On most nights I only get up once. Sometimes when it's bad I might get up twice or at worst 3 times. I hear that a big part of this condition is getting up numerous times per night. It's odd to me that as bad as it's ever been during the day (where I am going at a maximum every 30-45 minutes) I have never gotten up more than a small handful of times at night.

    Have you tried Elmiron?

    Do you have off and on bouts of fatigue? (more than just being really tired-fatigue)

    Do you find that when you are sick - like w/ a cold - your bladder symptoms improve significantly until you are well?

    Do chemicals (perfumes, deodorizing sprays) cause your bladder to flare?

    Sorry for all of the questions! Just curious if I am the only one that deals w/ the above too. Other than urgency when I do have the fatigue it is a real struggle too. Right now my doctor thinks I have an intestinal infection that might have been brought on by taking probiotics and diflucan. Oddly enough even being on Amoxacillan my bladder has been doing remarkably well. I have two more days of the antibiotic. My stomach seems to be doing better - my fatigue is a lot better BUT I had to mostly stop taking the Elmiron. It was as though it was causing the infection to worsen and I'd get horribly fatigued. Since I've stopped the Elmiron my bladder is still doing way better and the fatigue is gone - and my stomach symptoms (burning and cramping and some nausea-but no other symptoms) are easing a lot. I started to become deathly afraid that I wasn't going to be able to take the Elmiron anymore but have started to ease back on it b/c my bladder symptoms are still there. I have been taking half of the dose in water and it has been helping my bladder symptoms disappear again. I imagine once the infection is completely gone I'll have to start all over w/ the Elmiron. Although I will say it's odd that I take the Elmiron and within minutes it helps my bladder - I didn't think it worked that way so it's confusing. My GP is baffled by a lot of things I go through so I haven't gone to her since I am improving. Sorry I wrote you a novel here.

    PS I think you are right about the kolopin and valium - they are muscle relaxers. For me it stops the urgency and it relaxes me. I become so up tight when I have urgency.

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  • jp
    replied
    LiRIS

    Thanks so much for that very compassionate and encouraging reply.

    It's interesting, because the only thing that helps the urgency, which I agree with you is the worst, is , for me, taking Klonopin. I try to only take it when I haven't slept in days because I know you can become habituated to it, as I was for six years many years ago, but it seems to relax the bladder and ease the constant need to get up from bed and go once again ! I am sure that Valium is in the same family. I know that Klonopin is a muscle relaxant. so, maybe that has something to do with it. I know that most, not all, of my urologists that I have seen are reluctant to believe this, but for the most part, really, what do they know !!??!! So, they are reluctant to perscribe but only a few at a time.

    IC research may be making strides for the pain, maybe, but those who suffer with urgency, being pulled up hour after hour all night long is definitely a form of torture. So, I do hope that someone out there is addressing this issue with due diligence !

    Keep in touch, Allisun13..

    JP

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