LiRIS

[Kdub]

I just found out that I qualify to be a part of the LiRIS clinical trial. I will begin the process on April 16th. Has anyone been a part of this trail that has any info/suggestions for me?

[jp]

I have the pretzel in right now. I will get it out next Wed. I have no suggestions except that you are doing a great thing for everyone out there in being a part of this important study. Good luck, I hope you get the lidocaine.

[Kdub]

Thanks jp. :) Me too! At least we know we will definitely get lidocaine in the second phase of the study! Best of luck to you as well.

[tpronti]

Thank you so much ladies for taking the time out to do this.

[Kdub]

Welcome! I'm just thankful that I'm able to be a part of something so promising to all of us who are suffering.

[jp]

Thanks, tpronti. I hope this proves to be a very good thing for all.

[jp]

Thanks, Kdub..Where are you located? Please let us know how you are doing.

[needsrelief]

what is it like to have the pretzel in? does it feel uncomfortable? do you feel you are getting some relief from IC symptoms?

[jp]

At first, right afte the cystoscopy, I thought I could feel it tug a little, but then it may have been just the feelings after the cysto. I haven't had that feeling in the past week. Sometimes I think it has made a difference in the urgency, but then I have urgency again!! And I really don't have much pain, but then again, it could also be that I have the placebo and I am not in a flare right now as far as pain goes. So, I can't say that it has made a huge difference I get it out on Wed. and then I will know whether I got the real thing or not. I will keep you posted. I wish I could be so definite about it making a HUGE difference, but I can't. If it is the placebo, I will go back and then have the lidocaine put in. I will go through it all again, but this time I will know that it is lidocaine in there.

[needsrelief]

thanks please keep me updated. The nearest clinical trial site to me is a little over 2 hours away. :(. I wish it was more local. Its just a whole lot of driving. The study sounds promising and I really hope it gets approved before 2015.

[tpronti]

Yes, please keep us updated.

[BETHSHRONCE]

I have the pretzel in right now. I will get it out next Wed. I have no suggestions except that you are doing a great thing for everyone out there in being a part of this important study. Good luck, I hope you get the lidocaine.

Hi! I am new to this chat room. I have Interstital Cystitis and I am always in pain. If you would please let me now how the Liris works? Good luck I hope it works for you!

[jp]

Hi. I am so sorry you have IC. It is challenging. I was diagnosed back in 1987, so I am a long time warrior.

If you don't know what the "lidocaine pretzel " is, google it. This is what the LiRIS treatment is affectionately called. It is about the size of a quarter. They put it in your bladder via a cystoscopy. It goes in like a long noodle, and then curls around to form a pretzel like form.

It stays in for two weeks giving a continuous feed of lidocaine into the bladder. I really can't say that I know for certain I have that or a placebo. But this wed. I will find out as they remove it. They do blood work and you keep pain and voiding diaries. After it is removed, they monitor me for four weeks. If I have the placebo, I can then go and have the real lidocaine put in. I think I have less urgency. Bladder pain is not as intense as it was for years, but urgency is my main complaint. Especially at night.

there is real hope that this LiRIS treatment will not only help IC sufferers, but also people with other diseases , like bladder cancer, etc.

I hope this answers your question. If you have the trials in your area, you might think about becoming a part of this study.

[icgrrl]

The trial sites are too far away from me, I started begging to get in when I first heard of the pretzel. I cannot tell you how grateful I am that you folks are out there testing this new product for those of us that can't. Thank you so much from the bottom of my heart!

[jp]

ICGRRL, Thank you for the kind words. I got the pretzel out yesterday, and now will be monitored for four weeks. I think I got the lidocaine, but urgency at night is still bothersome. I am not sure what they expect from the pretzel, or how much they expect as far as results go, but I have not been in much pain and the urgency is less during the day. Also, when I go pee, I am able to expell all of it, unlike before when I was holding at least 200cc's. So, I am happy for these results. I will find out if I got the lidocaine in two weeks.

Hang in there. Help is on its way !!!

[backwoodsgurl]

Hey,

I am new the this section of the forum, But I am more excited that ever! I go for my first appointment on April 13th! I have been with out a instill since Feb 15th. I normally rely on them, So I am hurting quite a bit, and I have been hardly sleeping and pushing through! But I am traveling From North idaho to seattle to do my study which is 6 hours away. I am soo excited to start. I want to have hope that this works.

I have questions like if it works, then will i get to keep the pretzel in after the study? Does it hurt? Is there as much pain and urgency?

At this point I am willing to try anything!

My doctor here is getting the study and will be available to do the study in may, But honestly I dont know if i can wait to more weeks. I just wanna start NOW!

Any recommendations or advice from those on it?


THanks.

[tpronti]

Thanks so much for doing this!

[jp]

Backwoods girl.

Good luck. I am four weeks in.The pretzel has been out for two weeks. I am now being monitored for pain, urgency. I will find out in less then two weeks if I had the placebo or the lidocaine.


I really didn't have too much discomfort and i feel that whatever I have, the urgency is much better. I don't have much pain at all in the bladder.

JP

[backwoodsgurl]

Backwoods girl.

Good luck. I am four weeks in.The pretzel has been out for two weeks. I am now being monitored for pain, urgency. I will find out in less then two weeks if I had the placebo or the lidocaine.


I really didn't have too much discomfort and i feel that whatever I have, the urgency is much better. I don't have much pain at all in the bladder.

JP

Jp! thanks for the response. So when you go for the first visit, and the blood work, why is that you wait two weeks to start? Is there anything I should expect going in to this? I am only hoping to feel somewhat better going in to this, at the very least no more pain than im in.

I do have to say, im scared. I will be going to a DR I have never met before, and 6 hours away. So again... I am hoping this works.

thanks for the info!

Backwoodsgurl

[jp]

Backwoods girl,

i can't remembetr if you have to wait two weeks to start. It is just what they did with me. But I was the first one here in Las Vegas , so maybe they just needed to get all the paper work, etc, going.

I had never seen this dr. before either. But I figured that he would have to be pretty well respected to have been approved to conduct the study.

Don't be afraid. It is fairly easy. Others have gone before us and there have been no real complications as far as I have heard. i find out next week .. I do think my urgency is better. Keep in touch,

JP

[backwoodsgurl]

Backwoods girl,

i can't remembetr if you have to wait two weeks to start. It is just what they did with me. But I was the first one here in Las Vegas , so maybe they just needed to get all the paper work, etc, going.

I had never seen this dr. before either. But I figured that he would have to be pretty well respected to have been approved to conduct the study.

Don't be afraid. It is fairly easy. Others have gone before us and there have been no real complications as far as I have heard. i find out next week .. I do think my urgency is better. Keep in touch,

JP

Dear jp and others,

Please please please pray for me today and through this next week. My first appointment to start the study process was set to be friday. Well today seatlle called and wanted a copy of my hydro distension. I had asked my dr. in feb when I started the paper process and she assured me that I had done one. Well I called today to get a copy and it turns out my records show that I havent. :( I am in so much pain I want to die most days and my kidneys have been hurting more and more.

I lose my insurance on sunday. Seattle said they would pay for it to be done as part of the study if I do it in seattle, but I would then have to wait an additional 3 months after the hydro to start LiRIS.

I am scared I dont know what to do. I have to keep appointment for friday so either way I will start LIRis or I will sign to do a hydro and plan that on friday. but I hope that I can start LIRIs cause i hurt soooo bad. I just want to cry. I am frustrated, and upset that my doctor would say i have had the procedure done if i havent.

grrrrrr. anyways Please pray!PLEASE!!!!!

Thank you! :pray::cussing::bonk::toilet::rant::help::confused:

[jp]

Hey, gurl,

I am praying for you that you will be able to go ahead and get some help right away. I am so sorry that you are having so much pain. You are a courageous soul to even put yourself out there for this study. You are not only helping yourself, but all the others. I pray today you will be able to find relief to some degree. I am truly sorry that you have to go through this awful disease at such a young age. But the future holds the promise of help, so don't give up hope. By trying to get involved with this study , and all that you have to go through, you are showing to yourself that you will keep striving and trying and doing whatever you need to do to get some help and not give up, that your life if worth more then just this IC. I support you, and I encourgage you, and I think you very brave.

JP

[backwoodsgurl]

Hey, gurl,

I am praying for you that you will be able to go ahead and get some help right away. I am so sorry that you are having so much pain. You are a courageous soul to even put yourself out there for this study. You are not only helping yourself, but all the others. I pray today you will be able to find relief to some degree. I am truly sorry that you have to go through this awful disease at such a young age. But the future holds the promise of help, so don't give up hope. By trying to get involved with this study , and all that you have to go through, you are showing to yourself that you will keep striving and trying and doing whatever you need to do to get some help and not give up, that your life if worth more then just this IC. I support you, and I encourgage you, and I think you very brave.

JP
JP,
Thank you! I found out today that i wont be able to do the study right away. I go in for pre op on thursday and i have surgery on friday. I try to be brave. I just want to feel better. If i can try something that may help, then i will. It does suck having this at my age. I think I am going to look into part time disablity. I have asked my dr for months now and they keep tellling me im young and to stick it out, but its getting hard to work and the stress of making my bills and stress of pain is just making me hurt more. So that will be my next step, just dont know how to go about it. I want to keep working its just hard.

Just because I have IC i dont want it to define who i am. I want to be me for me, not for ic. i look at it as something i just have to deal with and take one step at a time.

Thank you tho for your kind words.

wouldnt mind chatting more, PM me.

[jp]

Just got back from my urologist. I thought that today I would learn whether I recieved the Lidocaine or not in the pretzel, but I will not be told. So, Now I can go back in and do it all over again, but this time, I will for sure get the lidocaine, so, i guess tomorrow i will start this all over. I didn't feel that the first instillation was all that amazingly helpful, so maybe I got the palcebo, so i will know now that i am getting the real deal.

I got CFS in 1978, was very , very sick for years. I was only only 26, had just had a baby and was teaching. A job I loved. But I had to give the job up. I got IC in 1989. I understand where you are coming from . I recieved SSDI back in 1987. The medical is what really saved me, as my checks were small as I had not worked for very long and had not made very much money. But the receiving medicare was a godsend.

It is very hard to have to change your life, and i had to at such a young age, also. But, I tried to be grateful, and as you said, not let my illnesses define me as a person. I never asked, "why Me?".. I tried to accept my life as it was playing out and do what I needed to do, trying to find the gift in everything. Not always easy , by any means, but I think it helped me many times not to despair.

Keep in touch. Good luck on Fri.

JP

[allisun13]

Hey JP! Thanks for not only doing the study but for coming back to this thread throughout your times spent doing this and updating us.

I was just called by my Uro's office and offered to be a part of the trial they are doing where I live (Charleston, SC). I have been on Elmiron for almost 5 full months now and have definitely had some improvement with a combo of that, mostly following the IC diet, probiotics and as needed hydroxyzine. I understand it can take 6 months to a year to get the full benefit from Elmiron so I am VERY hesitant to start anything right now since I've had some improvement. With that being said I think if I heard that this study brought everyone that did it great relief for a month or more (and since it's free) I'd likely give it a shot - for now though I am just going to keep it in my back pocket and hope that the Elmiron keeps improving me more and more as time goes by. My ultimate prayer is that I am one of those people that can eat or drink anything they want b/c the Elmiron helps so much. Only time will tell but w/ the improvment I've gotten thus far I am hopeful. Please continue to keep us posted on your experience with this. I hope more people thad to the trail will report here as well. Thanks so much for doing this and I am praying for you that it does work and it works well!

I hope you fee better soon!

[jp]

Thank you for the very sweet and encouraging words.

I am through with the first stage of the study and have opted to go ahead with the second. Meaning, the first stage was "blinded".. No one knew what I got, the Lidocaine, the placebo, or the sham.

Yesterday, I received the Lidocaine for certain in the unblinded part of this study. Now, I know that what is in me for two weeks is the actual drug. I can't really say that I was a 100 % free of symptoms. And with IC, sometimes we just are in a better place for awhile and the flares are not as often. So, I don't really know if I had the lidocaine the first time or not.

Now, I do know. So, I can report if it really helps a tremendous amount or not. I will let you know.

Thanks again. And I hope that , yes, the Elmiron helps you so much that you can eat and drink lots of things. I was able to do that for years and years, but now I am not so fortuante and am going from one flare to the next,but if you can have a period of time when you are pretty symptom free, then HOORAY !!!

Keep us posted.

JP

[allisun13]

Hey JP! I hope that you did get the placibo last time and this time there will be significant improvement. I tried home instills of heparin, bicarb and lidocaine and for me they seemed to worsen my symptoms. It gave me bad spasms (urgency). Not sure if my bladder didn't like the sodium bicarb (salt) or what but I quickly gave up on those. It does seem like for us all that it is going to be period of on and off again trail and error w/ meds to try to minimize symptoms as much as possible for as long as possible since there is no cure. Which is why it's great that they are still trying new things like this to help and people like you are out there willing to give it a shot. Are they doing EKGs and bloodwork on you? Are they giving you copies of the blood work if so? The info my doctor's office emailed me said they monitor those things. I was just curios if you got any of those results or feedback on any of that. Also it said you could be compensated up to $550. Not that $550 is a lot of money but for those of us w/ IC it can certainly help w/ treating options. Look forward to hearing more from you on how this second round goes. Wishing you the best!

[jp]

Yes, they do blood work whenever I have to go in. Also, BP, sonogram of how much urine I am retaining, weight, height.

I am going to be compensated about $627.00. Which, like you say won't be much, but it is a little perk. I signed up for this before knowing there was any $ involved, so I was pleasantly surprised.

Keep up the hope and keep on smiling. Today is all we really have, and what a gift it is inspite of this disease.

I really like ICN also.

Talk to you soon,

JP

[Briza]

Hi JP
Thanks for coming back to report on how your trial is going. It's all very interesting. I sure hope you get relief now that you definitely have the lidocaine version! :)

[jp]

Thanks for the encouragment, Briza!

JP

[jp]

Thanks, ICN... Love you guys..

JP

[jp]

Just finished the second phase of the study where they implanted the real lidocaine into my bladder. It helped with pain, but nothing for urgency ... In fact, a week after having it removed, I am in such pain now and urgency that I am getting up all night long. I am glad that I finished the whole study, blinded and unblinded, but , unless they address the urgency, I will not do this again once it becomes available.

JP

[allisun13]

Hey JP! I am so sorry that it didn't work and that you are suffering w/ urgency right now. For me urgency is the absolute worst part. :( I have found that the only thing that helps me when my urgency is real bad is Valium. I am lucky that my GP has presribed it to me. She agreed to do it for the short term while the Elmiron has a chance to work. I don't know what I am going to do if the Elmiron doesn't work and she decides I can't have it anymore. I am hoping that won't happen. So far she seems to be pretty compasionate. It just amazes me that doctors hold off or will not give us meds that may help ease us through this condition. This is a chronic condition - you would think that would make it qualify.

I tried instillations of bicarb, lidocaine and heparin and they gave me worse urgency so when I heard about this pretzel I was very leery of what it would do for me personally. Everyone of us is so different. I am sorry it didn't help you and I believe that I would probably have a similar reaction that you do so I thank you for trying it and for reporting back to us all on your experience.

I hope you start feeling better very very soon.

[jp]

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

[allisun13]

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.

[allisun13]

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.

[jp]

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.

[jp]

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.

[jp]

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.

[allisun13]

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.