Diagnosed with PSC five days ago so I'm new to this whole thing. Any information I can recieve would be greatly appreciated

I am a 38 year old Mum of 4 from Australia so if anyone else is from the same part of the world as me I would love to hear from them.
As I said above, I was told last Friday about PSC and I am a little lost. Not to worried but I am keen to learn all I can whether it be positive or not so positive. My Mum passed away 9 weeks ago from Liver cancer and cirrhosis. We had 11 days notice of this so it happened very fast. One of my sisters has Lupus and has been treated for that for approximately 20 years. So is this hereditary? Is there a particular gene?
I had my gall bladder removed in March 2012 and now PSC. I had major pain after my gall bladder removal and spent over a week in hospital trying to discover the cause. I had a CT scan and Endoscope done, both non conclusive as they where unable to see into my liver as there was to much swelling. So I am now wondering if it was actually PSC that caused the blockages back them.
I went to my local GP a few weeks ago due to a pain on my right side that was progressing and waking me at night on a regular basis. A lump was found so I was sent for a MRI. Results came back that the initial lump was now gone but that I had lumps through my bile duct and the left side of my liver was showing signs of PSC as well. So I am thankful for that little lump because if I had no had that then I would not of had the MRI and I would still be non the wiser.

I only know what I have read online and sometimes that's not a smart place to get knowledge from so I would love information from real people who are also living with this. I am having more tests this month but my specialist thinks it is early on for me so what could possibly be in store for me would be amazing to know.
My only symptoms at this point is the pain and that comes and goes but it is daily. Otherwise occasional itching but not to bad yet and tiredness. I have been tired for years. I had glandular fever 4 years ago and since then I am just always tired. Still a side effect of that or is this the PSC more likely...

Enough questions for one day.

Hoping I can connect with some people on here because I don't know anyone with this...

Thank you all in advance...


I was diagnosed about a year ago. I too really have very few symptoms most of the time except for flair ups every 1-2 years. I don't know how typical my situation is and from what I have gathered the most common thing about PSC is that there is no set "pattern" of how it progresses or behaves!

Robin aka desertcorgi

Hi Aussie Mum-

We are new to the diagnosis too and still in the learning stages. My son was diagnosed in March. I have found the pscpartners site to be very helpful. I've also done a lot of reading of academic papers - not sure how helpful that has actually been since I don't quite understand it all. Do you have any specific questions? My son is still on his prednisone treatment - which was at a high of 60mg daily, now tapering down with the plan to be on a maintenance dose of pred/imuran until they think his AIH is in remission (still need to figure out how that gets evaluated)... Our docs have agreed to give a three month trial of Vancomycin as well. Between the two drugs, his liver numbers are all back to within normal (as of yesterday - so a day of celebration for us!), but he feels really crappy and has not been successful in living a normal life. We're hoping it is side effects of meds/tapering and it will go away when he gets to lower dose. He'll get an imaging study in two months which will be interesting since he'll be 3 months post-ercp balloon, 3 months on vanco, and basically at maintenance dose of pred/imuran.

It is a lot to take in. Give yourself time... we're still figuring out how to not let this overwhelm everything. Today my son and I had a good laugh about the fact that you know you've hit a new low when there's vomit on your glasses and you are too tired to clean it off. Hoping that tomorrow is a better day...

lot's of terrific people here to converse with Aussie Mom. Sending you positive thoughts.