nss
10-03-2005, 02:02 PM
My DH heard them talking about IC on ABC radio in Australia.
I copied the interview for those that want to read about it: (I will be back to chat more on it later, have to go out for a little while).
Program Transcript
Norman Swan: Let’s stay with cystitis but of another kind and one which can
be extremely disabling and many would say incurable. It’s called
interstitial cystitis and is under researched and probably under diagnosed.
It’s said that it can take years for a woman to discover the reason for her
symptoms. One person who does study interstitial cystitis is Susan Keay –
she’s Professor of Medicine at the University of Maryland School of Medicine
in Baltimore. She and her colleagues have made some fascinating findings
which could unlock this condition’s secrets.
Susan Keay: The typical story is someone who notices an onset of symptoms
very much like a urinary tract infection which is pain, increased urgency
and increased frequency of urination. But when this patient goes to their
doctor, the doctor often doesn’t find any evidence of a urinary tract
infection and not only does he not find evidence even if they try empiric
antibiotic therapy generally speaking it’s not helpful and it never is
curative as far as we can tell, even if it does help alleviate the symptoms
slightly. So that’s part of the difference between interstitial cystitis and
a urinary tract infection. The other difference is when it presents these
women rather than having pain as they’re passing their urine which is
typically what we find for a urinary tract infection, urination actually
relieves the pain, it’s bladder filling that causes the pain in patients
with interstitial cystitis.
Norman Swan: These are women going to the toilet a lot not because they’ve
got urgency, it’s kind of to relieve their pain?
Susan Keay: Exactly and it does help relieve the pain. Often they also are
awakened at night and it disturbs your normal sleep pattern and that’s also
something that is common with interstitial cystitis.
Norman Swan: And does it come like a bolt out of the blue or does it start
slowly or what?
Susan Keay: Most patients describe their symptoms as starting rather
suddenly although I have to tell you that the epidemiology and the clinical
presentation of interstitial cystitis is something that is now well studied.
The median age at which people present is usually in the low 40s and about
90% of the patients are female.
Norman Swan: And you don’t know things like is it commoner in smokers,
whether you’ve had a few kids, all those sorts of questions?
Susan Keay: We don’t know that right now. Those sorts of questions will
hopefully be answered by some of these large epidemiology studies that are
just starting.
Norman Swan: And is there any treatment that works?
Susan Keay: There are two approved treatments, however neither one of them
is helpful for the majority of patients.
Norman Swan: And does it burn out with time?
Susan Keay: What has been published is that only about 10% to 15% of
patients will ever have a long term remission from symptoms.
Norman Swan: And are there other diseases that go along with it?
Susan Keay: There is a tendency for these patients to have other disorders
more than the general population. For example irritable bowel syndrome and
systemic lupus.
Norman Swan: This comes to the debate about is this like chronic pain or
irritable bowel syndrome where it might be a sensory problem with how your
brain perceives the rest of your body or is there something physical going
on like an infection?
Susan Keay: Because I’m an infectious disease specialist and the person I
worked with early during the study Dr Jack Warren is also an infectious
disease specialist he and I both looked very carefully along with some other
laboratories to try to find an infectious organism. We have not been able to
do that however, what we did discover by putting urine and bladder samples
from IC patients and controls onto a variety of different human cell lines,
we noticed that the urine from IC patients but not the urine from controls
caused a change in the shape of the cells in culture. This was a reliable
change that we saw with virtually 100% of the patients that we studied and
none of the controls.
Norman Swan: But what does the change in the shape mean?
Susan Keay: It rather suggested that there might be something toxic in the
urine that was causing the change in the shape of these cells. We then went
on to ultimately show that there is in fact a low molecular weight protein
which we call a peptide in the urine of IC patients that appears to be
highly specific for IC and now that we know the structure we’ve actually in
collaboration with NCI been able to make synthetic APF and show that that
substance is actually what caused the changes that we originally saw with
urine from IC patients. We then went on to look at whether or not this
change, the growth characteristics of the cells, the most reproducible
finding in the bladder tissue is thinning or ulceration of the lining of the
bladder.
Norman Swan: So these women have abnormal bladder linings?
Susan Keay: Yes. Many fewer layers to that lining, and in some cases it’s
totally gone and that’s the area of ulceration. Because of that we suspected
that there might be something abnormal about the growth of these cells and
we took our observation to see whether or not the urine would also cause a
change in growth. And in fact it does and this peptide which we call anti
proliferative factor actually inhibits the growth of bladder epithelial
cells in the laboratory.
Norman Swan: So you don’t know whether it’s a bystander or side effect of
something else or whether it’s the key factor in interstitial cystitis?
Susan Keay: No and in order to do that we’re now trying to develop an animal
model based on the anti proliferative factor.
Norman Swan: If it were to be the key intermediate, the key thing that’s
causing the actual problem any ideas about what’s upstream from that? Is it
these women have genes which trigger the production of this, they’ve eaten
something, they’ve been exposed to something in the environment, what’s the
best guess at the moment as to what might be upstream causing this substance
to be produced if indeed it is cause and effect?
Susan Keay: Well there are also genetic studies going on by other
researchers to determine whether or not IC may or may not be a genetic
disorder and that possibility does exist. But of course there could be
something in the environment also that’s causing that expression and we
don’t know right now.
Norman Swan: What about blocking it?
Susan Keay: That’s one of the reasons we also want to develop a good animal
model for interstitial cystitis. Once we have that model developed we will
then look at agents that either inhibit the production or the activity by
blocking the APF.
Norman Swan: Susan Keay who’s Professor of Medicine at the University of
Maryland School of Medicine in Baltimore. And it’s also possible that APF
will be useful for a diagnostic test of which there’s none at the moment.
Reference:
Keay SK et al. An antiproliferative factor from interstitial cystitis
patients is a frizzled 8 protein-related sialoglycopeptide. Proceedings of
the National Academy of Science, August 10, 2004;101;32:11803-11708
Guests on this program:
Dr Susan Keay
Professor of Medicine
University of Maryland
School of Medicine
Baltimore, Maryland
U.S.A.
Presenter: Norman Swan
Producer: Brigitte Seega
I copied the interview for those that want to read about it: (I will be back to chat more on it later, have to go out for a little while).
Program Transcript
Norman Swan: Let’s stay with cystitis but of another kind and one which can
be extremely disabling and many would say incurable. It’s called
interstitial cystitis and is under researched and probably under diagnosed.
It’s said that it can take years for a woman to discover the reason for her
symptoms. One person who does study interstitial cystitis is Susan Keay –
she’s Professor of Medicine at the University of Maryland School of Medicine
in Baltimore. She and her colleagues have made some fascinating findings
which could unlock this condition’s secrets.
Susan Keay: The typical story is someone who notices an onset of symptoms
very much like a urinary tract infection which is pain, increased urgency
and increased frequency of urination. But when this patient goes to their
doctor, the doctor often doesn’t find any evidence of a urinary tract
infection and not only does he not find evidence even if they try empiric
antibiotic therapy generally speaking it’s not helpful and it never is
curative as far as we can tell, even if it does help alleviate the symptoms
slightly. So that’s part of the difference between interstitial cystitis and
a urinary tract infection. The other difference is when it presents these
women rather than having pain as they’re passing their urine which is
typically what we find for a urinary tract infection, urination actually
relieves the pain, it’s bladder filling that causes the pain in patients
with interstitial cystitis.
Norman Swan: These are women going to the toilet a lot not because they’ve
got urgency, it’s kind of to relieve their pain?
Susan Keay: Exactly and it does help relieve the pain. Often they also are
awakened at night and it disturbs your normal sleep pattern and that’s also
something that is common with interstitial cystitis.
Norman Swan: And does it come like a bolt out of the blue or does it start
slowly or what?
Susan Keay: Most patients describe their symptoms as starting rather
suddenly although I have to tell you that the epidemiology and the clinical
presentation of interstitial cystitis is something that is now well studied.
The median age at which people present is usually in the low 40s and about
90% of the patients are female.
Norman Swan: And you don’t know things like is it commoner in smokers,
whether you’ve had a few kids, all those sorts of questions?
Susan Keay: We don’t know that right now. Those sorts of questions will
hopefully be answered by some of these large epidemiology studies that are
just starting.
Norman Swan: And is there any treatment that works?
Susan Keay: There are two approved treatments, however neither one of them
is helpful for the majority of patients.
Norman Swan: And does it burn out with time?
Susan Keay: What has been published is that only about 10% to 15% of
patients will ever have a long term remission from symptoms.
Norman Swan: And are there other diseases that go along with it?
Susan Keay: There is a tendency for these patients to have other disorders
more than the general population. For example irritable bowel syndrome and
systemic lupus.
Norman Swan: This comes to the debate about is this like chronic pain or
irritable bowel syndrome where it might be a sensory problem with how your
brain perceives the rest of your body or is there something physical going
on like an infection?
Susan Keay: Because I’m an infectious disease specialist and the person I
worked with early during the study Dr Jack Warren is also an infectious
disease specialist he and I both looked very carefully along with some other
laboratories to try to find an infectious organism. We have not been able to
do that however, what we did discover by putting urine and bladder samples
from IC patients and controls onto a variety of different human cell lines,
we noticed that the urine from IC patients but not the urine from controls
caused a change in the shape of the cells in culture. This was a reliable
change that we saw with virtually 100% of the patients that we studied and
none of the controls.
Norman Swan: But what does the change in the shape mean?
Susan Keay: It rather suggested that there might be something toxic in the
urine that was causing the change in the shape of these cells. We then went
on to ultimately show that there is in fact a low molecular weight protein
which we call a peptide in the urine of IC patients that appears to be
highly specific for IC and now that we know the structure we’ve actually in
collaboration with NCI been able to make synthetic APF and show that that
substance is actually what caused the changes that we originally saw with
urine from IC patients. We then went on to look at whether or not this
change, the growth characteristics of the cells, the most reproducible
finding in the bladder tissue is thinning or ulceration of the lining of the
bladder.
Norman Swan: So these women have abnormal bladder linings?
Susan Keay: Yes. Many fewer layers to that lining, and in some cases it’s
totally gone and that’s the area of ulceration. Because of that we suspected
that there might be something abnormal about the growth of these cells and
we took our observation to see whether or not the urine would also cause a
change in growth. And in fact it does and this peptide which we call anti
proliferative factor actually inhibits the growth of bladder epithelial
cells in the laboratory.
Norman Swan: So you don’t know whether it’s a bystander or side effect of
something else or whether it’s the key factor in interstitial cystitis?
Susan Keay: No and in order to do that we’re now trying to develop an animal
model based on the anti proliferative factor.
Norman Swan: If it were to be the key intermediate, the key thing that’s
causing the actual problem any ideas about what’s upstream from that? Is it
these women have genes which trigger the production of this, they’ve eaten
something, they’ve been exposed to something in the environment, what’s the
best guess at the moment as to what might be upstream causing this substance
to be produced if indeed it is cause and effect?
Susan Keay: Well there are also genetic studies going on by other
researchers to determine whether or not IC may or may not be a genetic
disorder and that possibility does exist. But of course there could be
something in the environment also that’s causing that expression and we
don’t know right now.
Norman Swan: What about blocking it?
Susan Keay: That’s one of the reasons we also want to develop a good animal
model for interstitial cystitis. Once we have that model developed we will
then look at agents that either inhibit the production or the activity by
blocking the APF.
Norman Swan: Susan Keay who’s Professor of Medicine at the University of
Maryland School of Medicine in Baltimore. And it’s also possible that APF
will be useful for a diagnostic test of which there’s none at the moment.
Reference:
Keay SK et al. An antiproliferative factor from interstitial cystitis
patients is a frizzled 8 protein-related sialoglycopeptide. Proceedings of
the National Academy of Science, August 10, 2004;101;32:11803-11708
Guests on this program:
Dr Susan Keay
Professor of Medicine
University of Maryland
School of Medicine
Baltimore, Maryland
U.S.A.
Presenter: Norman Swan
Producer: Brigitte Seega