Re: To Barbara (UK)dolly//Penny

[Guest guest]

I hope you are feeling better now. I am so sorry you are in so much pain...I just wanted to ask you a couple of questions....If I remember correctly, you were diagnosed 30 years ago --right? If so, what medicines were given to you to manage your PSC? Also, when did things really start getting bad? Take care...regards,

from penny,

I should have expanded on my message to Barbara yesterday. It's

my opinion that none of us should be expected to endure pain,

chills and fevers, etc. without some sort of medical help or

intervention. We deserve to be treated with respect. We deserve

to have doctors who will listen when we report symptoms and will

act accordingly in our best interests. We shouldn't be expected

to tough it out when our symptoms worsen and we are in pain. I

think we all have a good idea what is normal for us and what is

not.

When I suggested that she should be assertive, I didn't mean that

she should be abrasive or unrealistic in her expectations. To be

quietly and firmly insistent on getting the care you deserve gets

you further than being loud and obnoxious.

The fact that Barbara is a health care professional is kind of

working against her. In my opinion, she's trying too hard to

tough it out and self-medicate when a trip to the doctor is in

order. By now I hope that Barbara will tell us she's seen her

doctor and she's being treated appropriately!

Hi folks,

Thank you for your kind wishes. First of all Dolly, yes I started symptoms and deranged liver tests 30 Yrs ago next month, but didn't get positively diagnosed until 1988. I suppose back then ERCP's weren't so good, PSC was considered very rare and only in young men with IBD. Besides pain killers when needed I didn't have any treatment until after I was diagnosed and was seeing Dr Chapman for the first time. I was put on Urso 500 mgs X 2 a day and questran when needed for itching.

I wasn't too bad in myself until I had post ERCP pancreatitis very badly in 1991, I had been able to work part-time (about 25 hrs a week) until then but when I went back to work some months later it was obvious things were getting worse and Dr Chapman was very supportive about me retiring on grounds of ill-health.

So from early 1992 I haven't worked. I really have got much worse in the last year/18 months with severe pain, fatigue, fluid retention and itching with numerous attacks of cholangitis which now doesn't seem to be helped by any of the antibiotics.

I take dothiapin at night plus diuretics, anti stomach ulcer drugs, anti inflammatories plus colistipol for itching and co-dydramol and tramadol regularly and pethidine when needed.

So now I have seen my family doctor and he realises I think how things are bad for me but feels we should go along with Dr Chapman's advise for now and see what happens. Easier said than done but he has increased my tramadol, doubling the dose and I hope that will help, time will tell!

He has said that if I seem to be getting cholangitis really bad then he will contact Dr Chapman and see what he wants to do. Hhhmmmmmm. O well, give it a try I suppose.

Barbara (UK)