LiRIS Study Sites Expanded

[icnmgrjill]

Liris, Taris Pharmaceutical's new treatment for interstitial cystitis, provides a steady dose of lidocaine to the bladder wall. Currently in clinical trials in Canada, this is new development for IC treatments and the preliminary data, while not yet published, looks VERY PROMISING! Remember this company and this treatment which they hope will receive FDA approval in 2015!

Read a Forbes magazine blog about it here:

http://blogs.forbes.com/petercohan/2011/05/26/taris-biomedical-keeps-delivering-drugs-direct-to-the-bladder/

Read the current clinical trial recruitment here:

http://www.clinicaltrials.gov/ct2/show/NCT01150565?term=Liris&rank=1

The current round of clinical trials will end this summer. If you're Canadian and interested in participating, the research centers are below:

Canada, British Columbia
Dr. Steinhoff Clinical Research Recruiting
Victoria, British Columbia, Canada, V8V 3N1
Contact: Jayne Forster-Coull, RN 250-388-0840 jayne@gsteinhoff.com
Contact: Jen McKillop 250-388-0840 jen@gsteinhoff.com
Principal Investigator: Gary Steinhoff, MD

Canada, Nova Scotia
Queen Elizabeth II Health Sciences Centre, Halifax Infirmary Recruiting
Halifax, Nova Scotia, Canada, B3H 3A7
Contact: Susan J Winch, RN, BSN 902-473-6604 susan.winch@cdha.nshealth.ca
Principal Investigator: Jerzy B Gajewski, MD

Canada, Ontario
Centre for Applied Urological Research Recruiting
Kingston, Ontario, Canada, K7L 3J7
Contact: Laurel Emerson, RN 613-548-6033 emersonl@kgh.kari.net
Contact: Sylvia Robb, RN 613-548-7800 robbs@kgh.kari.net
Principal Investigator: Curtis Nickel, MD

[jvr]

Hi Jill,
So they hope that it will be approved in Canada AND the United States in 2015? I sure hope so-I'm excited about this treatment:-)

Thanks!
Jill:-)

[pal2pah]

Jill
I'm so hopeful about this. I really think a steady influx of lidocaine would solve most of my problems. The lidocaine & heparin intravesical instillation works well for me, but only for a few hours at a time. So this constant delivery system may be the brass ring for me. I'd cross my fingers, but I don't want Murphy to find out and jinx it. :wink:
Thank you so much for making my day with happy news.
pal2pah
Patty Hargis

[wolfaleena]

is anyone checking out the clinical trial in Escondido Caifornia?http://clinicaltrials.gov/ct2/show/study/NCT01295814?cond=%22Interstitial+Cystitis%22&rank=

[pal2pah]

They are still taking in volunteers. I inquired, but can't afford that much travel on my own dime.
pal2pah

[wolfaleena]

Pal2Pah: What did you think about the Adalimumab? Besides the fact that it is far and requires an every two week visit for 12 weeks?

I found it to be interesing... I have lupus and fibro as well as Interstitial Cystitis And i have had IC for 20 years now...UGh!

This doc that is doing this clincial trial really believes that IC has an autoimmune component..
I think it is a double bind study... I think .. and if it is, i believe that you have a 50 50 chance of receiving the placebo.... I am not sure if i am correct about this, so don't take me word for it or quote me on that information,
If i knew that i was getting the study medication, i think hat i would find away to get there. I have always thought that My IC has a auto immune component to it..being that i have lupus and fibro. It is not a very invasive study. it is injections of the medication or placebo, as i understand it to be..
I
I will be calling for more specific info about the whole deal sometime during this approaching week. I'll make my decision based on the infro i receive

Has anyone else seen it and seem interested in it? I do have some relatives that live not too far from their, and my sister lives in phoenix which is much closer than me.. I live in NJ... Maybe i could stay with my family out west and participate. not sure yet...
I would just love to feel semi normal for once n 20 years.

[pal2pah]

Wolfaleena,
I read the study info page and it is double blind. So it's 50/50 whether you get the drug or placebo. I really don' t know anything abt it, but good luck and God Bless.:kiss:
Patty
pal2pah

[wolfaleena]

thanks for the reply Patty..
I live in NJ and the study is in California; duration 12 weeks.
Like you said it is a 50 50 chance that you could receive the study meds...
with those odds, i don't think i will be going ... it would cost me a ton to go for 12 weeks.

The drug is Humeria..sp? My sister is RA and she uses it. IT is an injectable and she injects it every two weeks. My sister claims that is has been a miracle drug for her RA.
I got very excited about the trial since her RA is auto-immune and if IC is auto-immune then maybe this it the thng!
Since i have tried just about everything out there and nothing has worked, really, ... the only thing that has helped my pain somewhat is going to pain management doc... and he has prescribed methadone for the past 2 years.
the frequency is still awful, and restrics the quality of my life in such a disturbing way. BEing that i have had IC for 20 years... Can you imagine how many times i have used the toilet in the past 20 years.... It has got to beat the Guiness book of world records!!!!!
I need something that is going to reduce the times a day that i urinate.... i mean significantly...without making me go into retention. i have a real problem with not emtpying my bladder all the way. And whenever i have been given any type of medication to help stop the constant trips to the bathroom, i go into retention and can't urinate at all or just a little bit!!
Ugh! how frustrating ...

:rant: I feel so badly for my husband, I feel like he is burdened with a defective wife. I am just having a bad day that's all. usually I just put on my fighting gloves and bounce through another day. But I would like to not have to live like that.. We all don't want to live like that...
We want a quality of life.
Why can't these docs and researchers figure this thing out. It has been dragging on all of my adult life. I don't see any end in sight ... it is just the same old treatments that they try to offer and none of them have worked on me.. the only thing that has helped me a bit with my pain, like i said, is methadone.... (and it makes you totally constipated)..
Oh well., sorry to be a "Debbie Downer" but I guess i just had to vent.
I'll feel better tomorrow. I think i am just angry and feel that nobody in the medical field cares enough to get the ball going in a serious direction at a serious pace.....
I mean these are real people out here suffering.. their lives going by ...waiting for a cure or something significant that can make a real difference in the quality of their life.... :rant:
I am praying that i can find something or someone that can help me reduce this frequency and nocturia. i just want to feel normal again .:dance:

[Jocotter]

This sounds very interesting!

[kjc]

I am very close to the Halifax location and it would be easy for me to participate but alas I was too late as I was just informed that this study is now closed. They did indicate that there might be another phase in late 2011/early 2012 though. My name is one the list so fingers crossed.

[ademasters]

Wolfleena --- my uro took me off the vesicare/other similar meds nd actually put me on flomax/tamsulosen (sp?) has helped me to not retain as much and a better flow (urethral size issues)

[sheilacoito]

Hey! Very excited about the liris for when I have flares! Just wanted to share w you fellow instill gals- MArcaine is a longer acting version of lidocaine and mixed w bicard and heparin for an instill- SAVES THE DAY! I suggest trying MArcaine! Lasts more than 2x long:)

[bjcov]

Sheila, are you on the medical study for Liris? I am seeing a doc next week and their office is one of the sites that are doing the study. I've had 4 instills and the first one was with marcaine. Then they ran out of it and were using polocaine. By the 3rd and 4th one, I did see improvement . I asked for the doc to extend them and he ordered 2 more. I really wanna learn how to do these on my own although I am scared to death to do them. I think I Would feel better if I take control of my disease and not rely on doctors.

[sheilacoito]

Hey:) I am not in the study ONLY bc Praise God, I'm not currently having BLADDER/ urethra pain. My problems right now are from the PFD that resulted from long term flares. U will find it so easy and less painful to do it urself bc of the anxiety alone- I don't tense up half as much when I'm the one doing it. And at home, I can lay in any obscene looking position I want ( I lay on my front and on my sides to bathe the exact sore spots in my bladder). It totally helps!!! I sooooo suggest trying them urself! The risk of UTI is way lower at home as well ( with proper technique and hygiene). I'm so excited that ur dr was using marcaine! I'll have to look at the time on the prolocaine! I had thought of this myself after giving marcaine in the hospital as a nurse- I left it in my bladder for like HOURS and then was unable to pee later:) oops! Have u heard that nurses make the worst patients?! True!!! Lol:)

[bjcov]

Thanks Sheila! I appreciate you looking into the polocaine for me. The only thing I can imagine doing is the actual act of inserting a cath. YIKES! I've not been evaluated for PFD. There is only one person in my area that does it and she has me on a wait list! So annoying! This is part ofthe reason I am traveling to Seattle to see an IC specialist.

[chairmenmeow47]

i tried to register, but was excluded as a result of endometriosis. still though, i gave my name and number for future studies. even though i don't think lidocane helps me, i'm willing to try anything! i hope this works for those participating :)

[jp]

I am currently in the LiRIS study. Tomorrow I will be getting either the drug, the placebo or the "sham". I am praying that i get the LiRIS. I will keep you posted.

Anyone else in the study?

[Jocotter]

Where do you find the study sites?

[jp]

The Network will let you know if it is being done in your city. Good luck.. Keep us posted.

[bjcov]

Good luck! Keep us updated! What were the qualifications?

[jp]

Thanks for the encouragement ! You had to have a diagnosis of IC. You had to score a certain level on pain and urgency. And I think you have to be between 18 and 65. The dr. does a cystoscopy at the first exam. And then you keep a pain and urgency diary before you go in for the actual instillation. You may get the LiRIs or a placebo or a sham.. This is left in for two weeks, and then they remove it. Then they monitor you for four weeks, you keeping up the diaries. But, the good thing is, if you don't get the LiRIS the first time, and after the six weeks are over, you can, if you want, then get the LiRIS.

[bjcov]

How are you "officially" diagnosed? I keep hearing that they are diagnosing on symptoms now days. Sometimes I wish I could go to Dr Moldwin or Dr Parsons. Id love to hear what they wOuld say. Especially since my symptoms are not "typical" for IC. I should just bite the bullet and have the hydrodistension.

I hope you get the actual Liris and it works wonders for you!

[jp]

Thank you . I will keep you posted. I was a patient of Dr. Parsons back in the early 90's. I think you have to have had a cystoscopy with hydrodistension to be "officially" diagnosed for this trial. But that is not that big of a deal to me. I have had four over the years. Of course, this is under anasthesia.

[jp]

I understand about feeling everything in the urethra. :( This has changed for me now, so as of late, I go to pee, and my urethra feels so much pressure and pain. And not much comes out, especially at night when I get up. I am due to go for physical therapy for pelvic floor, but had to cancel until after this trail is over.

[jp]

I said you may get the LiRIS , but that is the device that is put into you. The drug is lidocaine, and it gives out a continuous feed of lidocaine into your bladder. If you don't get the lidocaine, you will get a placebo.. So, I am sorry I used the word "LiRIS" when I meant lidocaine !:dizzy:

[chairmenmeow47]

looks like i can participate in the study since i can determine when pain is related to IC and when it's related to endometriosis. yay!

[jp]

Good for you !! I just got back from having the procedure done. So, we will see if I am getting any results or if I have the placebo. good luck to you ,and I sure hope you get the lidocaine..

[Sheri Ellen]

Hi Kim, My family is from Halifax area....feel like i know you..lol.

[KristinKathryn]

I guess I am confused. I thought this procedure was only for pain. It sounds like it may help with urgency and frequency as well?