Elmiron for IC in men?

[jd]

Since I was diagnosed with IC, I've been researching treatment for it.

I was a little resistant on Elmiron at first, but the more I've been reading on it, I think it's sounding like a good option.

My question though, is if Elmiron might have any effect on IC related symptoms, such as some pain in the testicles, or in the urethra.

Perhaps Dr. Dimitrakov or Dr. Shoskes could answer whether or not Elmiron could help IC/CPPS symptoms in men outside of it helping the bladder.

Thanks.

[J Dimitrakov]

My question though, is if Elmiron might have any effect on IC related symptoms, such as some pain in the testicles, or in the urethra.

Perhaps Dr. Dimitrakov or Dr. Shoskes could answer whether or not Elmiron could help IC/CPPS symptoms in men outside of it helping the bladder.

Thanks.

Yes, pentosan polysulfate does have effects outside bladder lining. In fact, more researchers now believe it works on mast cells and nerves in the pelvic area rather than rebuilding the bladder. See research below:

Urology 2000 Sep 1;56(3):413-7

Pentosan polysulfate therapy for chronic nonbacterial prostatitis (chronic pelvic pain syndrome category IIIA): a prospective multicenter clinical trial.

Nickel JC, Johnston B, Downey J, Barkin J, Pommerville P, Gregoire M, Ramsey E.

Department of Urology, Queen's University, Kingston, Ontario, Canada.

OBJECTIVES: Chronic nonbacterial prostatitis/chronic pelvic pain syndrome (CPPS) has clinical and perhaps etiologic characteristics similar to interstitial cystitis. Pentosan polysulfate sodium (PPS), an oral medication indicated for the treatment of interstitial cystitis, has shown moderate benefit in reducing chronic pelvic pain and voiding symptoms in patients with interstitial cystitis. We undertook a prospective open-label, multicenter Phase II pilot study to examine the potential efficacy of PPS in the treatment of chronic prostatitis / chronic pelvic pain syndrome in men, using outcome tools validated for chronic prostatitis / chronic pelvic pain syndrome in men. METHODS: Patients with a diagnosis consistent with National Institutes of Health (NIH) chronic prostatitis / chronic pelvic pain syndrome category IIIA (inflammatory) were treated with PPS, 100 mg three times daily, for 6 months. The evaluation at baseline, 3 months, and 6 months consisted of the Symptom Severity Index, a Symptom Frequency Questionnaire, the NIH-Chronic Prostatitis Symptom Pain Index (NIH-CPSI), a quality-of-life assessment, and a subjective global assessment. RESULTS: Thirty-two patients (mean age 45.5 +/- 11 years; duration of symptoms 9.2 +/- 12 years) were enrolled in five centers; 28 patients were available for evaluation. Seven patients experienced drug-related side effects, including hair loss (n = 2), headache (n = 2), mild nausea (n = 1), mild weight gain (n = 1), and skin flushing (n = 1). The decrease in frequency (Symptom Frequency Questionnaire 28.1 to 17.9), severity (Symptom Severity Index 53.6 to 36.3), and combined location/frequency/severity of pain (NIH-CPSI pain 14.5 to 9.2) symptom scores at 6 months compared with baseline was significant. The decrease was associated with a significant improvement in patients' quality of life (quality-of-life assessment 5.3 to 3.8). Forty-three percent of the patients had a greater than 50% improvement in the Symptom Frequency Questionnaire, Symptom Severity Index, and NIH-CPSI (rated as clinically significant improvement). At 6 months, mild, moderate, and marked improvement was noted (subjective global assessment) by 33%, 19%, and 15% of the patients, respectively. CONCLUSIONS: PPS is well tolerated and appears to have efficacy in reducing the severity and frequency of general symptoms, reducing specific pain symptoms, and improving the quality of life in many male patients with CPPS. The results of this study justify the initiation of a randomized controlled trial comparing the safety and efficacy of PPS to placebo.

===
J Urol 2000 Dec;164(6):2119-25

Pentosanpolysulfate inhibits mast cell histamine secretion and intracellular calcium ion levels: an alternative explanation of its beneficial effect in interstitial cystitis.

Chiang G, Patra P, Letourneau R, Jeudy S, Boucher W, Green M, Sant GR, Theoharides TC.

Department of Pharmacology and Experimental Therapeutics, Tufts University School of Medicine, Boston, Massachusetts, USA.

PURPOSE: Mast cells are ubiquitous cells derived from the bone marrow and are responsible for allergic reactions as they release numerous vasodilatory, nociceptive and pro-inflammatory molecules in response to immunoglobulin E (IgE) and specific antigen. Mast cell secretion is also triggered by a number of peptides, such as bradykinin and substance P, and may also be involved in the development of inflammatory responses. An example is interstitial cystitis, which is a sterile painful bladder disorder that has been associated with a defective glycosaminoglycan bladder mucosal layer and an increased number of activated mast cells. Pentosanpolysulfate is a synthetic, sulfated polysaccharide that has been approved for the treatment of interstitial cystitis on the premise that it may replenish the defective glycosaminoglycan layer. We hypothesize that pentosanpolysulfate may also have an additional or alternate action on bladder mast cells. We report that pentosanpolysulfate has a powerful dose dependent inhibitory effect on mast cell release of histamine induced by the mast cell secretagogue compound 48/80. MATERIALS AND METHODS: Inhibition of mast cell secretion was documented by light and electron microscopy and extended to stimulation by substance P or IgE and antigen. RESULTS: The inhibition was more potent than that seen with the clinically available mast cell stabilizer disodium cromoglycate (cromolyn). Maximal inhibition by pentosanpolysulfate was apparent within 1 minute, was unaffected by the length of pre-incubation and persisted after the drug was washed off. In contrast, the effect of cromolyn was limited by rapid tachyphylaxis. In addition, while cromolyn has no effect on mucosal or rat basophilic leukemia cells, pentosanpolysulfate inhibited histamine secretion from both. Confocal microscopy using a calcium indicator dye showed that pentosanpolysulfate decreased intracellular calcium ion levels. CONCLUSIONS: Pentosanpolysulfate appears to be a potent inhibitor of allergic and nonimmune mast cell stimulation, which is an alternative explanation of its benefit in interstitial cystitis.

[webslave]

Yes, pentosan polysulfate does have effects outside bladder lining. In fact, more researchers now believe it works on mast cells and nerves in the pelvic area rather than rebuilding the bladder.

Mast cells are still the wild card in all this. A lot depends on confirming the neuropeptide --> mast cell link. Could there be something else affecting the mast cells, not nerves, is what I wonder (e.g. allergy, other immune system defect).

[Windsor2k]

is Elmiron a life sentence if it works? That is do you have to keep taking it to see the resultseven after the six months or a year?

Will

[webslave]

I thik it's a long-term treatment. Elmiron may cause dizziness and thinning of the hair, from what I've read.

[Richard.N]

I think it's a long-term treatment. Elmiron may cause dizziness and thinning of the hair, from what I've read

I've read quite a few anecdotal instances of people's hair getting THICKER on Elmiron! I thought it was just the fact that people fixate about their hair on Elmiron because the most frequent side effect (at a lowly 4% if my memory serves) is Alopecia Areata. I took a look at the side effects though and there it is: Hirsuitness!

Incidentally, according to the leaflet for medical professionals that comes with Elmiron, hair loss usually begins in the first four weeks of use and is limited to a single area of the scalp.

is Elmiron a life sentence if it works? That is do you have to keep taking it to see the resultseven after the six months or a year?

I don't want to sound negative but I'd swap a life sentence of chronic prostatitis / chronic pelvic pain syndrome for a life sentence of Elmiron if it guaranteed remission.

I'm not clear about duration though. Some people seem to come off it and be healed and others need to stay on it for maintenance. I'm up for review on it in February myself.