View Full Version : when will Liris be available to patients?
04-25-2012, 02:51 PM
Does anyone know how soon this will be an option for IC patients?
I have heard that LiRIS will be available in 2015.
04-26-2012, 10:10 PM
Not sure... but several centers are enrolling patients in clinical trials of it right now (Wake Forest Baptist Medical Center's Urology Department is one - this is where I go). I'm not enrolled in the trial yet but will consider it if my upcoming cysto/hydro and the latest change to my bladder instill recipe doesn't kill my flare pain. You have to stop doing all bladder instillations to be enrolled in the trial, and unfortunately, I'm feeling too crappy right now to give up my home rescue instills at the moment!
Read your post. I am enrolled in the study. I have been through the initial six weeks with the blinded part. This past tues, I recieved the unblinded pretzel so i do have the Lidocaine pretzel in me right now. Unfortuantely, my urgency has increased and I was up six times last night. I go back for my three day check up this morning. I even dreamt last night that I was in the emergency room having a dr. take it out. I just hope this improves over the next week and a half.
The blinded part of the study is phase 1 and you recieve either the lidocaine, the placebo or the sham. I felt pretty good during that time, but opted to go for the real thing this time as they allow you to do so once you go through the first blinded study.
04-28-2012, 01:07 AM
JP.... so sorry to hear you were up six times in one night. I know the feeling and it is both frustrating and exhausting!!! I hope things improve for you soon... keep me updated on how you do with the pretzel as I'm curious to know how the trial is going. I suppose I could just look it up because I work at Wake Forest, but I would rather hear from patients themselves - because we all know that is where the real information is :)
Thanks for the encouragment. I saw the dr. for my three day follow up yesterday, and we are making sure this is not a bladder infection. So, I am going throught a series of Cipro. It is it not better by Monday, then I will have the pretzel removed. He reiterated that since this is research, drs. know as little as patients do about what to expect, so we are all in this together, step by step, learning what works and what doesn't.
This device is being used on IC patients first, but the researchers are hoping if all goes well with IC patients, and we see real results, then people with bladder cancer, and other problems, will be able to have the device, the pretzel, installed in their bladders, delivering chemotherapy straight to the bladder, or wherever it needs to be, instead of having to go through the whole body. So, as much as we are the guinea pigs, this could have remarkable results for a whole host of sick people with different diseases.
I feel better today, only up three times last night. I hope to see this second phase through to the end.
04-29-2012, 02:29 AM
2015 I read. I had friend just complete all of the study. It made her pain worse and in phase 2 real lido she had burning.......not good results for her
Thanks for the info. Now, if i have to report that this has not worked for me, I won't feel like such a "failure".. I know it is nothing i have done, but everytime i have to go into the drs office, the staff is all there in great anticipation of what i have to say in regards to how great I feel. So far, not so much.
04-29-2012, 06:33 AM
Jp- do you know how much lidocaine is being released into the bladder during a 24 hour period?
No, I don't. I will ask next tues when it is due to come out. They don't tell you much in the blinded study, but now I would think it wouldn't be a problem, but then, they don't want alot of info. out there for people just going into this thing.
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