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Hi I'm in Australia and have had a confirmed Stage 1 PBC diagnosis this week. Still a little in shock about it all and trying to connect with others to find out how they deal with things. Have you had to make changes to your lifestyle or the food you eat? My specialist said i didnt really need to make any changes but im reading otherwise. Has anyone else experienced hair loss? I seem to lose heaps. Any advice would be greatly appreciated.

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  • Hi GayleShepherd

    welcome!

    I have been diagnosed since 2006 although certainly had PBC before. As a rare disease there is not really a great deal out there to help us other than the PBC Foundation, PBCers Organisation in America and the Canadian Society. I do not know a named organisation in Australia. There is no special diet for PBC although many of us have found our bodies do better on a more vegetarian diet or the auto immune diet some are on the paleo diet but there is nothing specific recommended by any authoritative body. My specialist said that drinking in moderation was okay but many find they cannot tolerate even a glass of wine. Personally I have the very occasional glass of wine on high days and holidays. As for diet I have reduced consumption of red meat, I rarely eat pork, I now never have any processed foods, everything is cooked from scratch. In the winter I have a lot of home made soups and in the summer lots of salads and I drink a lot more water now.

    Yes, I have very thin hair but again for some with PBC they do not suffer any hair loss whilst others do.

    If you have not already done so join the PBC Foundation (free to join through the link above) where in the members section there is a wealth of information.

    You say your specialist said you didn't need to make changes to your diet but that you have read otherwise - for most of us we have to find our way through a lot of out of date information so be wary of any web site that is not official or up to date.

    I am guessing that you have been prescribed Ursodeoxycholic acid (URSO), I hope you will find it slows everything up for you.

    best wishes

  • Thanks for the info. It's a bit mind blowing to come to grips with it all. And yes I am on URSO. Took my first dose last night. Hope it does slow things down.

  • I'm on the Gold Coast

  • Hi Louise, have you joined the Australian & NZ Facebook group ??

  • I'm in Perth

  • Hi Gayle I am also in Australia and was diagnosed with PBC stage 1 in 1988 and still doing ok even though I has progressed to stage 4. I think the only diet you need is to eat less fat and red meat as they are harder for our livers to digest, apart from that I am living my life as normal. We do have a Facebook support online group for Australians and NZ PBCers. I also have a Website dedicated to PBC with links and information. You don't need to feel alone as some of the PBCers in Qld, Vic, SA and WA have been organizing coffee and chat meetups.

    facebook.com/groups/Austral...

    pbcaustralia.org/

    Hope you have a look and join

    Hugs

    Doreen

  • Doreen thanks so much. I've joined the FB page and read everything on PBC Australia. As I'm very early stage 1 I want to do everything I can to stay as healthy as I can. My pharmacist has given me some really great recommendations and some foods to definitely steer clear of. Ive told my husband we won't be eating as much red meat and will have a few more vegetable dishes and fish. How soon did it take for the itching to start? I've had itching for many years but thought it was menopause. Does it get worse on URSO?

  • Hi Gayle, Some PBCers don't have the itch, lucky them :) I don't itch as much now but have scars on the front of my legs etc., from the scratching. I have tried a few things Questran lite you can get a script from your Dr but it was horrible to take and you had to be careful not to take it with your other meds. I use E45 cream for itching my family in the UK send it out for me. I got some when I was there last year, You can get it online. I think my itching started when I first started going through menopause but it was not constant, it flares up now and then. I also take antihistamines every day and that has helped. Some PBCers said starting Urso has helped their itch. Looking forward to "talking" to you on Facebook xx

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