Pentosan Polysulfate, i.e. Elmiron, is used orally for IC but can take 3 – 6 months to gain effect with 35-40% of subjects having marked improvement of symptoms.
as per here
Now it appears it can be given intravesically (into bladder) “twice a week for 10 weeks and thereafter a voluntary maintenance therapy once a month” with symptoms reduced to half in 5 weeks.
Int Urogynecol J Pelvic Floor Dysfunct. 2008 Jan 29 [Epub ahead of print]
The effects of intravesical pentosanpolysulfate treatment on the symptoms of patients with bladder pain syndrome/interstitial cystitis: preliminary results.
Daha LK, Lazar D, Simak R, Pflüger H.
The objective of the study was to determine whether intravesical pentosanpolysulfate (PPS) reduces symptoms associated with bladder pain syndrome/interstitial cystitis (BPS/IC). In a prospective, uncontrolled, open-label study, 29 female patients with BPS/IC received 300 mg PPS intravesically twice a week for 10 weeks and thereafter a voluntary maintenance therapy once a month. Treatment response was assessed by Visual Analog Scale (VAS) for quality of life and O’Leary-Sant Symptom and Problem Index (OSPI). Patients were tested before treatment, after 5 weeks of treatment, and 1 week, 3, 6, and 12 months after termination of the initial treatment. Twenty-five patients underwent the 10-week treatment and the 3-month follow-up. Mean reduction of VAS/OSPI was from 8.8/26.4 before to 4/15.3 after treatment, 3.8/15.2 after 3 months, 3.8/14 after 6 months, and 3.4/12.1 after 12 months. In 21 patients, renewed instillation or maintenance therapy was necessary. Intravesical treatment with PPS reduces both the VAS and the OSPI in patients with BPS/IC.
Recent IC articles are now using a 10 French foley catheter:
Int Urogynecol J [in press]; Hyaluronan treatment of interstitial cystitis/painful bladder
syndrome; Claus R. Riedl & Paul F. Engelhardt & Kurosch L. Daha &
Nike Morakis & Heinz Pflüger
They state: “All patients were instructed to take 50 mg nitrofurantoin on instillation days to prevent urinary tract infection from catheterism. All instillations were performed with hydrophilic 10 F Foley catheters.” 10 french is small see here .
I have had to abandon catheterizations in Regina because homecare does them. It appears some staff are either unfamiliar with the technique or more likely can’t do them in the dark which more likely happens in a home setting. In my last case infection rates were high; I have another case with multiple antibiotic allergies and I just can’t risk infections. The small catheter and prior nitrofurantoin is a good step.
I visualize the technique in office like such:
1) 12 cc syringe filed to 10 mls with saline, (removed from a 10 ml saline bottle to be reused later); end capped with sterile needle.
2) Plunger end removed and three 100 mg capsule contents put in syringe, end reattached and material dissolved.
3) Sterile needle removed, a 22 micro m Millex filter attached to end of syringe:
Millex as per here
4) a sterile needle attached to the other end of that and contents injected into the originally saline bottle. This is now refrigerated. I will know more once article has been put up on the Springer site.
I imagine one is to hold it as long as can; in the Hyaluronan study they wanted them to hold it a long time: “Instillation therapy was only performed in patients who were able to retain the instillations for a minimum of 2 h.”
Comment – Pentosan Polysulfate was supposed to be as “GAG layer” aid, but is actually a mast cell stabilizer with maximal histamine inhibition up to 88%
book here p 717
IC appears to be a mast cell disease in which Hydroxyzine and Singulair abstract here are also helpful. Given that IC also often have Irritable bowel disease, now implicated as a mast cell disease abstract here, one wonders if these disorders all form versions of Systemic Mastocytosis, a mast cell disease rarely diagnosed but often missed article here
I have one patient the has the classic features:
1) History of anaphylaxis – carries an epipen
2) Rarely urticaria pigmentosa – if allergies bad enough some urticaria will become brownish urticarial patches
3) multiple food allergies and bad “irritable bowel”.
4) Survives by taking antihistamines daily.
I have started her on Zatiden (Ketotifen), a Canada only mast cell stabilizer, and am arranging her to get a bone marrow to R/O more seri0us systemic disease.
Any thought on IC and mastocytosis would be welcome.