PBS is fraught with problems related to “heterogeneity” – some a neurologically based and some are inflammatory based for example. Finding any measure to work is a difficulty in dealing with “subtypes’. What we do know at this stage is the those with Hunner’s ulcer lesions in bladder(blood in urine would suggest it), would benefit from fulguration. A new innovation is an anti – tumor necrosis factor agent called Certolizumab. Though results with Crohn’s were seen in 2 week, it took 18 weeks for PBS to respond – so initial disappointment but not really since results were eventually seen.
Bosch, Philip C.
A randomized, double-blind, placebo-controlled trial of certolizumab pegol in women with refractory interstitial cystitis/bladder pain syndrome.
European urology (2018).
- Subcutaneous certolizumab pegol 400 mg or placebo (sterile saline)
in a 2:1 ratio at weeks 0, 2, 4 and 8 weeks
The question of Hummer’s ulcers was mentioned in:
Eur Urol. 2018 Aug 31. pii: S0302-2838(18)30600-6. doi:
10.1016/j.eururo.2018.08.015. [Epub ahead of print]
Treatment of Bladder Pain Syndrome: One Size May Not Fit All.
Peyronnet B et al
Of the subgroups of PBS the one group that does respond to treatment are those with Hummer’s ulcers that benefit from fulguration.
Recently, bladder urgency though not frequency was helped with Mirabegan 25 mg (I use it in bladder frequency issues but the dose is 50 mg od so not sure why less)
Comment – as with all “mab” immune manipulaters, it will be pricy. Those with blood in urine should be scoped for hummer’s ulcers that could benefit from fulguration during cystoscopy.
addendum – I came across this nice tip using ice suprapubic for pain relief by Mazoli:
Mazoli also has tip for taking 1/2 teaspoon baking soda in 1/4 cup water for pain relief: