Hi I'm new to this site BUT NOT the disease. I have been dealing with PBC for 10 years now.Anyone live in Sydney Australia out there?

[SNOOZY]

I am just starting a new drug trial ,Colchicine and Methotrexate plus Folate to settle side effects (has anyone tried these?)This is sort of a last ditch effort as i am not responding to all other tried and tested drugs. I also take Urso. Prednisone is for a lung disease i cant shake called B.O.O.P, anyone out there have this as a secondary disease? i have G.A.V.E (watermelon stomach) and get regular iron infusions. my fatigue is like everyone elses i guess and i try to just keep going till i cant anymore, then i sleep sitting up HA HA HA at 43 yrs of age thats funny really. i work full time in my own salon which is getting harder to do but im trying my best. i have 3 children and a supportive hubby. i have also got Hypa Pigmentation due to PBC and although i have always had a deep olive tone but i am so dark now that i could pass as an indian ??? anyone else have that?looking forward to reading your input, Snoozy

[Val02]

Hi Im in the UK but was interested to read you had B.O.O.P as I had a bronchiectasis a couple of years before my diagnosis with PBC. I had the bronchiectasis removed along with a lobe of my lung. At the time of my diagnosis with PBC I asked my dr to write to repiratory to ask whether the two were linked, the answer came back as highly unlikely. However having been a healthy person for 40 years the sudden and dramatic decline in my health I have always suspected they were related. Can B.O.O.P cause a bronchiectasis?

My skin goes a shade darker each year which has resulted in me acquiring a healthy look..lol.

I only take URSO for the PBC as it is considered well controlled, ie. LFTs are good.

Welcome to the site and hopefully others may respond to the other things you mentioned.

[SNOOZY in reply to Val02]

hi thanks for reply, cant say if boop can turn to bronchectasis but they did find one other case of a woman in her late 50,s with pbc and boop. so they believe it is secondary auto immune problem but it is taking a toll and batteling for first place . had lung biopsy a few years ago as they thought it might be cancer as it was spreading all over and then lungs collapsed ....thank god thats in the past, trying to stay healthy and well for the family is what keeps me going .so what meds work for you?

[Val02 in reply to SNOOZY]

For the PBC I just take URSO which works well for me. As regards my lungs I take a range of medication to keep the airways clear, such as fluticasone,montelukast and ventolin. For my upper airways (as I have allergic rhinitis) I take a steriod nasal spray and an anti-histamine. The montelukast I think is given for allergic asthma. n effect without this little lot I get recurrent infections, with this lot and a bit of good luck I stay relevently clear. I have standby antibioctics in case of infection. Before my operation I was so ill and in and out of hospital all the time, so I do know how it makes you feel. They could never give me a reason for my bronchiectasis which was why I asked (as I live in fear of getting another one). As a result of the steriod treatment I received before the operation I now have osteoporosis - I remember questioning the respiratory consultant at the time and he said strong bones will be no good to you if you have stopped breathing ( I guess he had a point). Now I seem to have developed a range of neurological problems so off to see a neurologist next week to see what he makes of it all. If its not one thing its another....

[Hidden]

Welcome Snoozy! I'm in the US and I think this site is the best but would like to mention a few others. They are: PBC Support Australia, PBCers Organization, PBCers Europe, Canadian Liver Trust and British Liver Trust. Good general information about liver health.

This site is my FAVORITE but you may find the others to be interesting as well. Take care!

[toohey]

Hi Snoozy,

I am in Brisbane, just wanted to offer a excellent series of books by Dr Sandra Cabot of Sydney who now specialises in Live Health. I take her supplementary medication called Liver Tone and it has been a life save for me. (get at the chemist) I refuse to take Urso, because of how it is made, from live bears who are kept in tiny cages and milked regularly, plus all the material about the trails on the drug show that it gives no better an outcome than if you took nothing.

You must be amazing, working as well as having 3 children, honestly I don't know how you are doing it, you need a huge pat on the back. I hope you do remember to take time out for yourself at least a couple of times a week.

Take care

[SNOOZY in reply to toohey]

thanks for the praise some days thats all you need to forget the bad moments. i tried liver mate and tonics and the whole healthy approach late last year and stopped taking all other meds, but after 4 months i was feeling god awful and my LFT were shocking!! everything trippled and i had to toss all the natural stuff out and get back on the heavy drugs to try and improve my health. its not the first time i have tried the healthy alternative and failed. ive tried pure milk thistle from irradolagist and liver diet and pills and tonics, i just cant find the one that suits me. how far along is your liver? do you have dry eyes,mouth, nostrils? blotchy palms and dark pigmentation? what about itching? i have finnally found a drug that works on that and it works so im sticking to it for now as i have drawn blood from serious scratching every night. it might not work for others and it takes a few weeks to kick in but at least im not tearing myself apart.its RIMYCIN 300. it seems to work for me for now .

chat soon

chow

[zipitydoo in reply to toohey]

Urso is not made from bears at all . It is made chemically to be like bear bile.

[Val02 in reply to zipitydoo]

Your absolutely right zipitydoo. No one should be put off from taking it on ethical grounds.

[jrobertson1 in reply to toohey]

Although ursodeoxycholic was originally derived from bear bile, it is now synthesised so no bears actually harmed at all for the Urso we take in the western world. Thought I should put the record straight as I had similar concerns when first prescribed Urso.

[plizzard in reply to toohey]

hi snoozy good to see someone else from aussie on here i am on the far north coast nsw..i did not think urso was still made from bear bile maybe someone knows for sure i was hesitant to take for same reason but dr assured me it was okay. the urso has slowed my pbc down i am sure!

i guess we all have different reactions to different drugs .. i cannot take any natural therapys as i had liver failure last year and speacialist said not to take any over the counter meds.. so what do you do!! its good to read other peoples experiences with pbc.. ita complicated illness

all the best plizzard

[AussiePBCmum7 in reply to plizzard]

Hey where on the far nth coast are you? I am also on fnc.

[plizzard in reply to AussiePBCmum7]

hi

wow someone from the north coast i live north of byron bay. i was beginng to think i was the only one with pbc in aussie,lol!!

[plizzard in reply to toohey]

hi toohey , good to see another aussie on here. i have read the sandra cabot books .. i have been on urso 12 yrs now and feel that it has slowed the pbc . i did not want to take it also because of the bear bile but i am sure now its not done like that maybe someone knows for sure !!! my dr say its a synthetic drug now .. i cannot take natural therapy as i had liver failure last year and advised not to take over the counter meds so it all seems different advice i guess you have to do what works best for you..i live on the far north coast nsw and see a specialist at greenslopes hospital but had been seeing dr at the royal womens hospital for 12yrs but when liver failed last yr refered to new dr as she is on transplant team at princess alexander hospital but i seem well at the moment take care

[toohey]

jrobertson 1

Thanks for that info, I would appreciate being directed to any site to show me that is the case, because I have not been able to find one.

[zipitydoo in reply to toohey]

here is one i have found there is also a reference on a pet site as it can also be given to dogs but not cats.

wisegeek.com/what-is-ursode...

Ursodeoxycholic acid is found in the bear bile used in traditional Chinese medicine. Bear gall bladders have been used for centuries as a homeopathic to treat liver disorders. Commercially, this compound is made in a laboratory, rather than being obtained from actual bear bile. There are many references, however, to bears being raised in Asia, as a source of bile to treat a wide variety of ailments.

[Hidden]

Hi SNOOZY

I'm up near The Entrance (Gosford area) - I was diagnosed with PBC 18 years ago and have been on Usofalk for the last 10 years.

[plizzard]

hi dianne

i live on the far north coast nsw and have had pbc for 13 yrs been on urso for 12yrs you not seem to see pbc in australia so much. but there are more people on here from aussie..

[SNOOZY]

Hello to you gals from north coast. unfortunately im no where near you. im from south west sydney, closer to Camden. but its great to know im not alone over on this side of the world.

[littlemo]

Hello there to all you in Australia it is so good to hear from pbc people so far away. I live in a veery small place called Ireland ( In the North to be precise) and dream of living somewhere hot and sunny like Australia as we only see proper hot sunshine for about 4 days a year if lucky)! As all of you seem to be old timers like myself in relation to having pbc ( I'm actually only just turned 42 so not old really!) wondered if any of you have tried not having the urso (with medical consent that is) and just using milk thistle. The reason I ask is that I have just come off urso ( my consultant is aware) and wonder if should get the milk thistle to help protect my liver.