Intravesical liposome versus oral pentosan polysulfate for interstitial cystitis/pai

[icnmgrjill]

This is VERY interesting. The authors describe liposomes as "stable fat bubbles filled with water that adhere to a surface, may serve as a lotion for wounded or leaky bladder..." Apparently the liposomes don't have to contain a medication to have a beneficial effect.. it is more like a soothing balm. Makes you go Hmmm! - Jill


Department of Urology, Chang Gung Memorial Hospital Kaohsiung, Medical Center, Chang Gung University College of Medicine, Kaohsiung, Taiwan, Republic of China.

We evaluated the safety and efficacy of intravesical liposomes, a mucosal protective agent, compared to oral pentosan polysulfate sodium for interstitial cystitis/painful bladder syndrome.

We performed a prospective longitudinal study of the effect of 2 independent treatments (intravesical liposomes and oral pentosan polysulfate sodium) in patients with interstitial cystitis/painful bladder syndrome. Ten possible responses (or measures) to treatment were monitored at 3 time points, including baseline, and weeks 4 and 8. A total of 24 patients with interstitial cystitis/painful bladder syndrome were evaluated in a 1:1 ratio to intravesical liposomes (80 mg/40 cc distilled water) once weekly or to oral pentosan polysulfate sodium (100 mg) 3 times daily for 4 weeks each.

No patient had urinary incontinence, retention or infection due to liposome instillation. There were no unanticipated adverse events and no significant worsening of symptoms during followup. Statistically significant decreases in urinary frequency and nocturia were observed in each treatment group. Statistically significant decreases in pain, urgency and the O'Leary-Sant symptom score were observed in the liposome group. Decreased urgency in the liposome group had the most profound effect of the ordinal measures.

Each glycosaminoglycan directed treatment seemed beneficial. Liposome intravesical instillation is safe for interstitial cystitis/painful bladder syndrome with potential improvement after 1 course of therapy for up to 8 weeks. Intravesical liposomes achieved efficacy similar to that of oral pentosan polysulfate sodium. Further large-scale placebo controlled studies are needed. Intravesical liposomes appear to be a promising new treatment for interstitial cystitis/painful bladder syndrome.

Written by:
Chuang YC, Lee WC, Lee WC, Chiang PH. Are you the author?

Reference:
J Urol. 2009 Aug 13. Epub ahead of print.
doi:10.1016/j.juro.2009.06.024

[Snowden1]

This seems like it may be extremely helpful. Does anyone know how long it takes to get from the research phase to approval for IC patients?

Teresa

[jjengar]

This is very exciting news. I hope we can all benefit from this should it prove effective and accessable. I wonder how long we'll have to wait.

[Landish]

Thank God!
Something new to try.

[purpleviolet]

This isn't really a drug, right? Just some fat molecules so why can't some adventurist urologist get some from the company that makes liposomes and instill them into some willing patients. I know I would do it, but my uro at the University of Washington can only use what their pharmacy has - so conservative. I see there is some cystistat trials going on in my area. I may volunteer even though last time I volunteered for a trial I got creamed. I think cystistat has been around for years in Canada. It takes the FDA years to move. I've been reading about promising treatments for years and years it seems. After 40 years of this I am running out of time.

[purpleviolet]

Think I was mixing up cystistat with uracyst. I think the uracyst is in trial? and the cystistat is in Canada and I don't know if they are the same or not,


This isn't really a drug, right? Just some fat molecules so why can't some adventurist urologist get some from the company that makes liposomes and instill them into some willing patients. I know I would do it, but my uro at the University of Washington can only use what their pharmacy has - so conservative. I see there is some uracyst trials going on in my area. I may volunteer even though last time I volunteered for a trial I got creamed. I think cystistat - correction:(not sure if that is uracyst or not) has been around for years in Canada. It takes the FDA years to move. I've been reading about promising treatments for years and years it seems. After 40 years of this I am running out of time.

[Snowden1]

Yes they are testing uracyst right now in the U.S. I don't know why they don't just market both of them here. People need help now and other countries like Canada and China have been marketing them. It must be about profits. If it doesn't cause you to kill over and die on the spot or paralysis - I want to try it. Pain and agony everyday is not a way to live.

Why do you think you got creamed in the trial you were in? Did you get the placebo? Or did the product not work?

I am going to do the preliminary exam etc. for the uracyst trial. PLEASE everyone pray for me that I get into it and that it is not the placebo - PLEASE. I am asking everyone I know to say a prayer - even if it is just a little one. Thank you.
Teresa

[purpleviolet]

The question was why I got creamed by the last drug trial I was in. The base for the instillation was alcohol that's why. I don't know what I got - placebo or drug but didn't matter because the trial failed - probably from using alcohol. Don't know what the researchers were thinking.

[Snowden1]

I can't believe they put alcohol in the instil. That is crazy! I hope that is not what I am getting. I guess I should ask.
Teresa

[squirrel]

This isn't really a drug, right? Just some fat molecules so why can't some adventurist urologist get some from the company that makes liposomes and instill them into some willing patients.

YES!!! I totally agree! Use a -desperate-and-willing-to-try-every-new-medication-ME! :bow:

[Marti]

Jill, the standard they use for assessing the efficacy of the liposome method - comparison to oral pentosan - does not give much to go on.
Given the fact, demonstrated in one expensive trial after another, that Elmiron is no better than hydroxyzine alone, or even no better than placebo, saying that a treatment compares favorably to oral pentosan is about like saying it's as good as strawberry jam!
Intravesical pentosan may be a different story, but I suspect that the "93% effectiveness" reported for the lidocaine - hyaluronate- pentosan- bicarbonate installations are attributable to the lidocaine.
Which is great until it stops working for you. However, it worked fine for me for ten years so I can't really complain.

I'm trying PTNS now, so we'll see how that does.
Cheers
Martu

[Marti]

Cystoprotek is better than Elmiron. Much better. And if "herbs" versus drugs is your concern, Cytoprotek should be right up your alley.
Takes about three months to work, but then it does.

[icnmgrjill]

Hi Marti... that was an older posting.. couple of years old. Lots of new developments with liposomes and I know what research center that is testing liposomes for the delivery of other medications like Elmiron. I think it sounds fascinating so far! I agree Marti. CystoProtek performs quite well for many patients and Dr. Theo has done at least one long term study that was published in 2008 in the Canadian Journal of Urology that showed solid improvements in IC symptoms. Here's a link - http://www.ncbi.nlm.nih.gov/pubmed/19046494

[Marti]

Yeah, I saw that it was older, I cannot recall now how I stumbled upon it.

Of course, I have the Theo article - my Theo database is complete, I've lost count of the number of articles.

A few weeks back, one of the members on our mastocytosis listserv said, "I'm gonna marry Dr. Theo!"

I told her she'd have to stand in line! 8 - )





Hi Marti... that was an older posting.. couple of years old. Lots of new developments with liposomes and I know what research center that is testing liposomes for the delivery of other medications like Elmiron. I think it sounds fascinating so far! I agree Marti. CystoProtek performs quite well for many patients and Dr. Theo has done at least one long term study that was published in 2008 in the Canadian Journal of Urology that showed solid improvements in IC symptoms. Here's a link - http://www.ncbi.nlm.nih.gov/pubmed/19046494

[Marti]

Jill, I have some articles to send you, and some fascinating news. But I cannot find your email address anymore. The search fan on gmail sux - I know I have your email in the archives from old CSUC email account, but it appears to be a major excavation to retrieve it.

The forum might be a place to post the new ideas, but I confess its complicated format just overwhelms me - there are all these subject threads that have to be negotiated and I cannot figure out where anything is supposed to go!
The same thing happened to one of the most useful mastocytosis listservs - it morphed into one of these forums.

Please send me your email and I'll send you the articles and tell you what's up. I have a new collaborator & he's on to something fascinating.

cheers
marti