Australian pbc sufferers?

[Jmorrison]

I am wondering whether there are other Australian pbc sufferers on this forum and also whether an Australian support group also exists?

[Aussielouise]

There’s a few of us! The Facebook group ‘Australia and NZ PBC support group’ is good. It’s a closed group but you just have to ask to join. Also it’s very worthwhile joining the British PBC Foundation as they have great support and information.

Where are you? I’m in queensland

[Jmorrison in reply to Aussielouise]

Hi Aussielouise. Very helpful info- thanks!

I'm in Geelong, Victoria.

[Ladyliver]

Hi Aussielouise, I am from Brisbane and also am part of the above Facebook group. The pbc foundation website is very good also lists other groups.

[Lizzy71]

Hi Jmorrison! I'm here in Melbourne!!

There aren't many of us here in Vic but there is a Facebook page "Australian & NZ PBCers: which is great for us Aussies :-). Look it up in Facebook and request to join.

Liz

[Jmorrison in reply to Lizzy71]

Thanks Lizzy

[mtrafter]

Hi I am from Melbourne, also am also part of the above Facebook page.

[Hidden]

Hi, I'm from the NSW Central Coast - near The Entrance. As others have said, check out the Australian & NZ Facebook group.

[Sunshine54]

Hi

I live in Queensland. Was diagnosed about 6 months ago. I hate this disease.

I didn't know about the Facebook page. I'll have to check it out.

I wish there was a list of what foods are OK or not.

Some days I'm good and others sometimes not. Having depression certainly doesn't help.

[Jmorrison in reply to Sunshine54]

It's not much fun is it? I was put on an anti depressant when diagnosed. I was told at the time it was to help me sleep but I now know that the condition can lead to depression. Hang in there! Apart from alcohol I haven't heard about any prohibited foods except that keeping weight off is recommended as fat on the liver puts in it under extra strain. Easier said than done when dealing with constant exhaustion!

[gwillistexas in reply to Sunshine54]

Search liver friendly foods. Click 2nd link “healthy grocery list” by Liver Doctor. You will find a wealth of information & it will explain different properties of foods that are good for the liver

[mcclo]

I'm in Sydney, due to anemia I had blood tests that showed lft abnormality 7 months ago. Since i have no symptom, seeing 4, 5 GPS both no idea of what being wrong. It seems in australia pbc is a rare disease.

It was upon my own research I pushed for the AMA and ANA tests that eventually confirmed that I have Pbc. How did you folks find out yours?

[gwillistexas in reply to mcclo]

G’morning! Mine was found in routine yearly lab. My Alk Phos was elevated. Dr then ordered AMA, ANA Cascade & a few other labs. AMA M2 was positive. Was then sent for ultrasound & then a fibroscan. What is your treatment plan?

[mcclo in reply to gwillistexas]

Did not check on the forum sorry for late reply.

Good to hear that you are being looking after by a knowlegible doctor. I was sent to CT scan and ultra sound both indicated the liver is normal. Afterward I was referred to a professor of gastro and liver dept in a public hospital. He prescribed ursofalk and arranged Fibrocan for liver, colon and stomach endscopies to check the possible cause for anemia. I asked how my condition being reviewed, the professor said a baseline would be set up to monitor my response to treaments.

Did your gp send you to the Fibroscan?

[gwillistexas in reply to mcclo]

No, my Internist ordered all the labs & ultrasound. He then referred me to the GI with all labs & ultrasound results. GI ordered fibroscan.

[gwillistexas in reply to mcclo]

GI will repeat fibroscan yearly. He said he will then be able to check progression after being on meds for a year.

[mcclo in reply to gwillistexas]

I think I should have yearly fibroscan too.

[gwillistexas in reply to mcclo]

Wouldn’t hurt. Mine is September but I’m ready now, lol!

[Schnauzergirl]

I am n Canberra.

[Schnauzergirl]

I am in Canberra.