Symptoms - Ivor - questions for Dr Chapman

[Guest guest]

Ivor -

I've been wanting to respond to your request for questions for Dr

Chapman at the UK PSC conference in July. athan discusses the

symtpoms of fatigue and poor sleep. In addition, I would ask about

the symptoms of abdominal pain, RUQ (right upper quadrant) pain,

bloating (similar to reflux and GERD symptoms), plus itching. These

are such frequent PSC related symptoms. I would ask if there is any

recent or on-going research into better symptom management for

improved quality of life on any of these symptoms. While we work

towards a cure or prior to liver transplant, if symptoms could be

treated better, then an individual's daily quality of life would be

better. With poor symptom management, functional ability and quality

are compromised.

Thanks.

Joanne

(, Ca; mom of 16, UC/PSC 2-06; JRA 1998)

> > Several articles relevant to our interests in the latest May

edition:

> > incl. D. (A leading PBC researcher), Fatigue in cholestatic

liver

> > disease. Is it all in the mind? (He says it may be all in the brain.)

> Interesting article! Having suffered from fatigue with PSC (but I

don't

> think I'd have ever been diagnosed as depressed), it sounds like he may

> be on the right track. One thing that I'd mention is that since the

> liver disease seems to cause significant amounts of sleep difficulties

> it's hardly surprising that it causes fatigue. There may be other

> things that contribute to the fatigue as well, but for me I certainly

> had more problems with fatigue when I was sleeping poorly... I wonder

> if these researchers have thought to include that as a consideration in

> their research?

>

> athan

>