Having great success with Uracyst

[cadyfatcat]

Hi,

I am by no means a regular on this forum but I am a male and I consider myself to have IC (Interstitial Cystitis), Pelvic Floor Dysfunction, and IBS. That being said I was diagnosed by countless Urologists at top medical institutions as having Chronic Prostatitis for three years before I was diagnosed with IC (I had to insist my Uro gave me a KCL test because he did not believe I could have IC). My point is there is an overlap in the diagnosis and perhaps in the etiology of these diseases, and thus I just want to make my story known here in case any men now find themselves in the same situation I was in before being diagnosed with IC, or find nothing that helps.

I am from New York, but I recently traveled to Canada to get a drug called Uracyst; it is a Bladder instillation. Believe me, it sounds worse than it is, especially when considering its effectiveness. You don't need a prescription to get it up there because it is a "medical device", not a drug. It is currently in stage III trials here however. I had developed bad PFD from a lot of years with inadequate treatment for my IC; my PFD is ameliorating by the day by using the Wise Anderson protocol in tandem with the Uracyst treatments.

Uracyst is amazing and it has changed my life, I am not totally better yet but I believe it is a possibility. If you told me I would find something that would work so well a couple months ago I would not have believed you.

So por fin, if you have Chronic Prostatitis that is refractory to any treatment you have tried and you have exhausted them all, maybe consider looking into whether you might have IC, or just give Uracyst a try if you are in Canada or can get it and have a Dr who will do or will show you how to do the instills.

Alex

[webslave]

Thanks for the report, cadyfatcat! (The medical profession now refers to IC as "Bladder Pain Syndrome", BTW, or even BPS/IC.)

[gmccormack]

cady fat cat
so are you using self catheterization? Do you have pain in your bladder specifically ? Do you have any other chronic prostatitis / chronic pelvic pain syndrome symptoms?
thanks

[cadyfatcat]

gmcorrmack,

I do self catheterize -- I don't think many American Doctors will go out a limb and actually do these instillations for you because of the legal implications (Uracyst not being FDA approved yet). My Uro does know what I am doing though, he just showed me how to do it myself.

I had all chronic prostatitis / chronic pelvic pain syndrome symptoms, as I was diagnosed as having it for three years before I was diagnosed with IC. My symptoms started off as pain in the testicles, a fullness in the rectum, frequent painful urination, and pain with sex. These symptoms progressed and waxed and waned, but the long of it was I was hardly functional in bed with a girl anymore due to PFD, and I had to piss often with reduced flow and sometimes pain. I also developed a chronic achy pain in my pelvic region.

It is very difficult to differentiate pain in the bladder from general pelvic pain/ chronic prostatitis / chronic pelvic pain syndrome pain. If I were able to do it, perhaps I would have been diagnosed with IC/PBS earlier. However, if you think you might have IC or that bladder pain could be adding to your chronic prostatitis / chronic pelvic pain syndrome pain, there is an easy litmus test that I believe works well: follow the IC diet for a couple of weeks. Here is the link:

http://www.ichelp.org/Page.aspx?pid=390

Stick to the foods in the "Bladder Friendly" area. I know it sucks but just tough it out for a couple weeks. If you notice improvement you might want to look into IC/PBS, and getting a KCL test. A KCL test is where a urologist instills a KCL solution into your bladder, if this causes greater pain, you know that the bladder is at least one source of pain and something you need to treat to get better.

Please let me know if you have other questions

Alex

[Bladderneck]

I assume you dont use Lidocaine in the instill.

I know some do but thats about it.

I'm not a big fan of Lidocaine myself because I get constipated after the dentist.

[webslave]

Uracyst was the subject of a clinical trial.
http://clinicaltrials.gov/ct2/show/NCT00150488

The study was published in January 2009. About half the people responded to the drug. Looks potentially useful in protecting the bladder lining from irritation by urine if you have the Bladder Pain Syndrome variant of UCPPS. But it's not treating the root cause of the condition.

BJU Int. 2009 Jan;103(1):56-60. Epub 2008 Sep 3.
A real-life multicentre clinical practice study to evaluate the efficacy and safety of intravesical chondroitin sulphate for the treatment of interstitial cystitis.

Nickel JC, Egerdie B, Downey J, Singh R, Skehan A, Carr L, Irvine-Bird K.
Department of Urology, Centre for Applied Urological Research, Queen's University, Kingston, ON, Canada. [email protected]

OBJECTIVE: To report a multicentre, community based open-label study designed to assess the efficacy and safety of intravesical sodium chondroitin sulphate in the treatment of patients with the clinical diagnosis of interstitial cystitis (IC). Chondroitin sulphate is a naturally occurring glycosaminoglycan (GAG) in the bladder mucus layer and changes in this GAG have been implicated in the pathogenesis of IC, and small single-centre studies have suggested that intravesical chondroitin sulphate may have efficacy in IC.

PATIENTS AND METHODS: Patients with IC were treated with sodium chondroitin sulphate (Uracyst, Stellar Pharmaceuticals Inc., London ON, Canada) solution 2.0% via urinary catheter weekly for 6 weeks and then monthly for 16 weeks for a total of 10 treatments. The primary efficacy endpoint was the percentage of responders to treatment as indicated by a marked or moderate improvement on a seven-point patient Global Response Assessment (GRA) scale at week 10 (4 weeks after the initial six treatments) compared with baseline. A major secondary efficacy endpoint (durability) was the percentage of responders on the GRA scale after 10 treatments. Additional secondary efficacy objectives were differences from baseline in Patient Symptom/Problem Index scores over the course of the treatment compared with baseline.

RESULTS: In all, 47% of the 53 enrolled patients with long standing moderately severe IC (mean [SD, range] diagnosis of IC 3.0 [3.4, 0.1-16] years; duration of symptoms 9.2 [9.2, 1-39] years; baseline symptom score 14.2 [3.2]) were responders at week 10. At 24 weeks, 60% were responders. There was a statistically and clinically significant decrease in the mean (SD) symptom and bother scores from baseline at 10 weeks and 24 weeks, at 9.0 (4.3) and 8.1 (5.0), respectively (P < 0.001). There were no significant safety issues during the study.

CONCLUSIONS: This multicentre community based real-life clinical practice study suggests that intravesical chondroitin sulphate may have an important role in the treatment of IC and validates the rationale for a randomized placebo-controlled trial.

PMID: 18778342 [PubMed - indexed for MEDLINE]

[Bladderneck]

Cady, I got my Uracyst this week.

The prob is I'm not gonna do this without cath-training.

It seems it would be hazardous.

[Bladderneck]

There is a Stoma store here that carry butt cath and vesical cath.

I tried the butt cath to decompress colon gas few times.

It is a personal area and I had to be careful to avoid pain.
Like others things, it works for a while then it makes my lower colon angry.

[Bladderneck]

What is the size of the catheters needed?