Q.  Is there a connection between Arthritis, and PSC ?
A.  There is a type of arthritis that is related to active ulcerative colitis, without PSC.  It involves a stiffness in the hands, and that goes along with diarrhoea in colitis.  And there is a particular genetic fingerprint.  But that occurs only more rarely in PSC, where we find some of our PSC patients may suffer from Rheumatoid Arthritis.  This is a specific auto-immune condition which also damages the joints of the hands.

Q.  Ivor mentioned that two questions had come from the American PSCers ~ Johnathan and Joanne H. have asked the following ~ They are very interested in your fatigue research.  One of them says “One thing that I would mention is that, since PSC causes a significant amount of sleep disturbance,  it is hardly surprising that it causes fatigue.  There may be other things that contribute to the causes of fatigue as well, but, for me, I certainly have more problems when I am sleeping poorly.  I wonder if these researchers have thought to include that in their consideration of the causes ?

A.  Well, they have !  They do go to some lengths to exclude that.  Obviously, if you are itching, and you can't sleep, you are going to get fatigued, but that’s a sort of normal fatigue.  We are talking about quite a different kind of phenomenon: the kind of fatigue associated with with PSC is not really the same as the fatigue referred to here.  This fatigue has a central effect , and it is something going on within the brain.  It is not reduced by liver transplantation, which would be the scenario you quote.  If you are itching, and therefore not sleeping, that kind of thing would be cured by transplantation.  So these are different kinds of fatigue, and there are different causes.

Q.  And the second American question ~ “I would ask about the symptoms of abdominal pain: right upper quadrant pain: bloating similar to GERD symptoms, plus itching.  These are such frequent PSC related symptoms, and I  would ask if there was any recent or ongoing research into better symptom management, in relation to improved quality of life,  for any of these symptoms ?
A.  Well, I don’t think that all of these are, in fact, PSC symptoms.  The right upper quadrant pain certainly is, and sometimes that can go along with blockage of bile ducts in a stricture.  There may be worsening of jaundice and itching.  That can be dealt with by opening the stricture with a stent, or balloon endoscopy.  Or, in the worst case scenario, even a liver transplant, if things get very bad.  The other symptoms mentioned , such as bloating and heartburn, are not due to PSC.  They are due to reflux, which is common in 40 to 50% of the population anyway.   I lecture on reflux to students, and I ask them ~ how many of them have reflux ?  About  40% of them put up their hands.  These are medical students aged about 25.  So reflux is not a symptom of PSC .  But I would take the pain in  the upper right quadrant fairly seriously.  We would probably use ERCP to think about relieving any blockage that we find.  And looking at liver function tests, as well.

Q.  About ileostomy ~ a patient was told that, if he’s had an ileostomy, after nine years he shouldn’t get PSC.
A.  Complete nonsense !!  PSC can occur up to twenty years after you’ve had your colon removed.

Q.  About the nature of fatigue in PSC.
A.  What I was talking about in relation to fatigue in PSC, is a specific syndrome of being so tired that you are unable to lead a normal life.  This is separate from other forms of fatigue ~ it isn’t unique to PSC, it also occurs in PBC.