Objectives. An oral preparation of pentosanpolysulfate sodium (PPS) wa
s recently approved by the Food and Drug Administration for interstiti
al cystitis (IC). Previously published articles have documented improv
ement in symptoms in 28% to 63% of patients, but no long-term studies
have been published. No unique characteristics except for Hunner's ulc
er have been found in patients experiencing relief from PPS. We report
our experience with PPS following patients up to 116 months and analy
ze baseline parameters in an attempt to characterize long-term respond
ers. Methods. Baseline and follow-up data from 97 patients with IC and
enrolled in a compassionate use study with PPS at the University of W
isconsin from 1987 to 1995 are analyzed. Previous treatments had faile
d, and patients had to pay for PPS. Patients continuing treatment with
PPS were monitored every 3 months with questionnaires and laboratory
tests. In 1996 an update on medication and a questionnaire developed b
y the National Institutes of Health Interstitial Cystitis Database wer
e sent to patients who had discontinued treatment. Results. By the end
of the study period 11 (11.3%) of the patients were still taking PPS,
with 6 (6.2%) doing so continuously for more than 18 months. Three (3
%) patients who discontinued PPS were in long-term remission. An addit
ional 15% had remission for a substantial period. Except for a weak co
rrelation between less constant pain (P = 0.0439), no correlations wer
e found between baseline parameter; and duration of treatment with PPS
. Conclusions. On a long-term basis, between 6.2% and 18.7% of patient
s with IC benefit from PPS. The only baseline factor predicting respon
se to PPS was less constant pain. (C) 1998, Elsevier Science Inc. All
rights reserved.