any pbc ers from Australia on here as I have googled and they keep referring me back to here

I put off a a biopsy for 3 years as I thought between my thyroid and menopause they were my problems, my biopsy showed portal inflammation and scarring so they confirmed pbc. my family have been great but are all expecting the worst . any one know where any aussie pbc support groups for families are would be much appreciated thankyou

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  • Hello dm1360.

    There are contributors to this site who are Australian as I have read their comments previously. I do know of one lady but at the moment unfortunately I cannot remember her name (sorry).

    I find the directory on here a bit awkward in searching for members of this site. Sure someone will take notice and hook up with you soon.

    The only support groups that are online are America, Scotland and the North of England. pbc.org I think is the American site, PBC Foundation is the one based in Scotland and Liver North is in North of England.

    There is also features on PBC from the Queen Elizabeth hospital here in Birmingham so maybe there is some feature like that out in Australia. Maybe you could try contacting via email PBC Foundation and enquiring as sure they would know.

    Good Luck.

  • Hi there

    yes there are a few of us from Australia. I was diagnosed about a month ago and like you have found nothing in our own Country. I have found this to be a wonderful site with wonderful people just like us who find our disease baffling as everybody has different side effects and symptoms. We are here to support each other and help us along our journey. The blogs are an excellent way to find informaton to help any questions you may have.

    WELCOME..and remember we are close by if you need any support.

    Take care

    Cheers for now

  • thankyou dissy I felt a bit isolated and baffled as to where to obtain info apart from googling, the mayo clinic was good, but full of doom and gloom, about 3 years ago the docs said about a liver transplant and I thought they were nutters and never went back, but now I know they were right, I look ok apart from weight loss and the fatigue, rashes and yellow finger nails so its hard for people to realise what your body is actually fighting all the time, I start meds next week and the side effects don't sound nice , im baffled if there is no cure what do they actually achieve for an already struggling body system. look forward to hearing from you and thanks

  • If you look on Facebook you will find a community called PBCers Australia. Might be worth a look.

  • Hi I am in Australia too, I was only diagnosed about 3 months ago so very new here too. It is quite overwhelming when first diagnosed to try and get your head around this condition and what it means. You will find lots of information and support here, I have found it incredibly helpful and it certainly makes you feel less isolated to know there are many others around who are going through similar experiences. Is the medication you are starting Urso? If so I have been on it for 3 months now and other than a little nausea that only lasted for the first week or two, I have had no side effects at all. The aim of the medication is to replace one of the more damaging bile acids made by the body with another. This can then reduce damage to the liver and slow down the progression of the disease. There are many people here who have been taking Urso for several years and are doing very well.

    Good luck with starting your meds,

    Puddles

  • Hi there

    I am also from Australia and like the other Aussies on this site, have found it a supportive and interesting community. Have you spoken with your consultant about your concerns and worries ? He/she is really the best person to answer your medical questions and try and alleviate your understandable concern. I was diagnosed 10 years ago ( I'm 48 now ) and have been taking Urso all that time with zero side effects. Although I have now fallen into the minority group that no longer respond to Urso, most people's bloods show positive results over long periods of time and unfortunately at the moment it is the only medication we have for PBC. Have faith in your Dr and know that the PBC foundation and this community are here for you.

    Hope that helps a little from a fellow Aussie !

    Karaliz

  • Hi Karaliz just reading ur comment there about you being unresponsive to the Urso? How did you find this out? Are you being trialed on any other drugs for the PBC? Hope you dont mind my asking.

  • Hi littlemo. Good to hear from you. Do you remember you and I discussing this via your thread about whether doses of urso are correctly prescribed ? I had a look back and I explained how I was on the OCA trial ? At the risk of repeating myself, in a nutshell, over recent years my LFTs have deteriorated, making me ,as my Dr puts it, a non-responder so consequently a contender for the Obeticholic Acid trial. I do feel very fortunate , however , as in spite of this and dropping albumin, my bilirubin is still normal. My consultant made the comment that with the amount of liver damage I have ( stage 3 fibrosis, via biopsy) he finds it amazing I'm not jaundiced !! So, grateful for small mercies and proving once again, that we all have a unique journey on the PBC road. I think your own bilirubin is quite high, littlemo, since you stopped Urso to relieve the itch ? Are you and your specialist considering restarting it ?

    Sending good wishes to you in Northern Ireland from way down under !!

    Karaliz.

  • Hi Karoliz so sorry now so remember you telling me that anoter lovely feature of PBC that is not discussed much the memory probs! I will look back and re read that post. Am not seeing my consultant until Jan due to a six month backlog for the outpatients clinics, thats the N.H.S. for you! The itch has started to become more frequent in last couple of weeks and the fatigue more troublesome in the last week. Am hoping it is all just down to my being back at work (as I have a "term time" contract I have the whole summer i.e. 2months off work which is fab) but with the rising bilirubin and other enzymes rising (though thankfully albumin normal) feel may be down to this. I would consider going back on the Urso but at a lower dose than was on before if it meant keeping my liver stable for longer and prevent me needing a transplant. I am getting married next year and just want to stay fit and healthy at least until then. Hope you are managing to keep yourself as well as possible. Amazing to think you're sitting over there thousands of miles away prob in beautiful sunshine while i sit here on a very wet day in Ireland having gone through a night with gale force winds! Isn't technology brilliant. :-) bfn. x

  • I know, right !! I live in Melbourne so it can get cold but I have to admit it was a lovely sunny day today. The power of the internet to bring 2 people who live so far apart together is awesome ! I send you all the luck and best wishes in the world as you head towards your wedding, littlemo - you sound as though you have had a very rough ride with the itch. That is good that your albumin is normal but your bilirubin is a concern, isn't it ? Is there no way you can be seen earlier than January ? Is it possible to see a private specialist or is the NHS the only road one can take to get help ?

    Really hoping for the best for you.

    Karaliz.

  • Hi again gonna c how I go over the next week if things not setttling will get on to my General Practioner (GP) and see if she can arrrange for me to see the consultant earler. My GP is very good I have to say as I am not the only PBC patient that she has so she has actually learnt a lot from us over the years. I could go see the consultant privately but on point of principal having paid taxes all my life feel should get my treatment on the N.H.S. Having said that if did feel things going downhill fast would ditch the principals and go private!! Will keep you informed. Take care from a still very wet Ireland though not stopping my 6 yr old son who has been running in and out all day playing between showers. Made of tough stuff us Irish! Bfn. x

  • Your little boy sounds like a gem ! I think that's a wise plan to possibly see a Dr privately if things don't seem stable. All the very best to you littlemo.

    Karaliz

  • Hi. I'm an Aussie who has just joined this group. I was diagnosed about 10 years ago. (I am now 57). Urso still working. My specialist did say that he was trialing another drug. I don't know the outcome.

    I have found acupuncture helpful in managing fatigue.

    I have had some itching. Not to bad. I just hope it does not get worse.

  • Hi rosem I was diagnosed 13 yrs now.on urso .have had ascites. And enlarged spleen.generaly not feel well. I live on the far north coast of nsw. And see specialist in brisbane.also my local dr is

    great. ....plizzard

  • Hello again, I think healthangel is in Australia. Apologies if you aren't but I seem to recall you are.

  • Lil55

    Hi dm1360

    I was diagnosed 20yrs ago and there was a PBC group (Vic based) at the time.It closed down when the lady running it got to transplant. When my family moved W.A. I did meet up with a few PBC 'ers but it too petered out. As for me I'm awaiting the call for a new liver having been activated for transplant 2months ago. Wish me luck to receive the gift of life.

    Best wishes.

  • I am also in Melbourne and have a website and also a Facebook page for Australian & NZ PBCers. I was one of the co-founders of the PBC support group which folded in 2002, I left the group in 2000 due to ill health but I now have more time so have been having PBC meetings in my house or another PBCers house as we tend to take turns. I met a lovely lady from Tasmania when she had to come over for her 6 monthly check up after she had a transplant 8 years ago. It was so nice to meet her after being friends on the Facebook PBCers page. I have created a database with suburb and postcode which I upload to the Facebook support group page also have created a map of Australia & NZ so everyone can see where all the members live. facebook.com/groups/Austral... pbcaustralia.org

    xx

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