Feeling positive..

Yesterday I took my brother who suffers from PSC, another autoimmune liver condition, to his support group meeting in Oxford. A doctor - Roger Chapman spoke at the meeting and although it was a PSC event, he did refer to other conditions, PBC and hepatitis, overlaps etc. he discussed his and other ongoing research, here, in Europe and in the USA.

I have to say I came back feeling very positive about what is currently going on and also that we as a group suffering from liver problems have a better outcome than was previously thought, this was helped by the fact that conditions are diagnosed much earlier nowadays and in the past studies have always just included people in very critical situations - nearing transplantation etc, so their outcomes were much worse.

There seems to be lots of work being done to look into other medication, obviously funded by the pharmaceutical industry, but led by the likes of dr Chapman and his colleagues in many countries

On the Urso note, the view was if it brings down your LFTs then it will have a positive impact on the condition long term. They know it doesn't work for everyone, but he talked about other drugs not far away. He also talked about the symptoms - fatigue, although difficult to medicate for, he suggested a structured exercise regime, which he agreed sounded hard if you are fatigued, but he said it helps. The itch was also discussed (PSC sufferers seem to get all the same ones...) and he reeled off a list of suggestions, sorry I did not write them down.

He was fascinated by the fact that siblings my brother and i, have different autoimmune liver conditions, which he had never heard of before.....

Just thought a post might interest some of you. Also the PSC support group was very complimentary about the PBC foundation, so keep up the good work Robert and co.

Lou xx

[Dollyhenriquez17]

What provoke PSC.. Or what does (S) stand for ?

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PSC stands for Primary Sclerosing Cholangitis. It is narrowing of the bile ducts, the symptoms are v similar to those of PBC

[SC49]

I have tried so hard to exercise regularly but it wipes me out. I find it so frustrating and depressing to keep on doing it and to get the same results over and over again.

Did he mention any research where the structured exercise plan has been shown to work? I know that there is a lot of debate about the benefits of exercise in for example Chronic Fatigue Syndrome / ME with some doc recommending exercise and others saying that it doesn't help I haven't seen much discussion about it for PBC.

[Hidden]

I agree, when feeling fatigued, as bad as it sounds, the best route is to get up and keep on the move. I was fatigued during 2010 but I was on the go all day in a full-time job and it wasn't a job where you spent more than your short lunch break sat down.

After diagnose in Dec 2010 I continued to get out and about, do a lot of walking as don't have use of a car during the day and spend most weekends also walking distances.

Although the fatigue long since left me (just left with the dreadful itch at night), I still find I start to suddenly feel tired around 3p.m. every day. I put that down to the fact that I often don't manage to get an adequate night's sleep due to the itch.

I find that even when I have that feeling I don't want to get moving, I drag myself up and get on moving. True some days just walking back from town can feel like I'm taking 2 steps forward and 1 back but I plod on knowing that walking isn't exactly going to do me in.

I also think that with having PBC now, any form of even light exercise is probably good as it keeps the joints moving, of which we are informed that with PBC we can suffer bone problems.

I don't actually class walking as exercise though it is. I know a lot of retirees and they are pretty good ages. They have never driven cars and tend to walk most places every day as I actually do. Some take considerable time to reach places but being retired they have the time but they all seem pretty much fit for their 80+yrs. My own gran walked everywhere all her life and she was still around until her early 80s.

I've never particularly been a fan of running/jogging. I used to run about with my children whilst they were growing up but I don't deem it a good form of exercise myself. I think it for the young and very young adults. Unlike running/jogging, at least with walking, the heart won't feel as stessed out in my opinion and it will keep the blood flowing and the system turning.

[Pooche]

I agree exercise does help. Whether it's from physical perspective or just mentally. I ride a horse at least 4 mornings per week, some days it's a slow ride and other days a bit quicker. Also walk my dogs for an hour a day, again that could be in one go or split into 2 shorter walks. Do allow myself to have a day off on a Sunday! Some days fall asleep at the table! Also find that the hot weather makes everything harder so I for one am glad that it has cooled down!!!

[littlemo]

Thanks for sharing that its great to know there is ongoing research gives us all hope. My greatest hope at the moment is that they will find a drug or procedure that could elongate the life of our livers specially as lot of us are quite young with familes to rear.