Another Australian :)


My name’s Ross, and I’m from Sydney.

New to this community, unfortunately not new to PSC. Was diagnosed after a routine blood test in 2010 turned out to be less than routine.

I had no initial symptoms for a few months and my GP at the time never really followed up on the blood test until I turned glorious yellow one weekend a few months later. A week in hospital had them thinking I had Auto-immune hepatitis, was given some info and and prednisolone and shuffled out the door. 6 months later it was not really responding, so back in I went where they did an MRI and changed their minds to “probable PSC”.

While awake in the middle of the night on the ward I made the huge mistake of asking Dr Google what PSC was. Needless to say I didn’t really sleep well for a while after that.

A few days later my liver numbers came back down to earth and they let me go home armed with an updated diagnosis and a pile of prescriptions and followup appointments.

Then nothing happened for 7 trouble free years. Took my meds, went to my appointments, all was well. Until early 2017…

When I ran into what I now know was my first visit from cholangitis. Stabbing, writhing pain, fever, all that jazz. As I didn’t know it was cholangitis then, I just went to my GP, he scheduled an ultrasound for the same day, but by the time I got there the worst had past and I spent a day or two feeling a bit off and then got on with life with the Ultrasound showing nothing of interest.

Throughout 2017 I would go on to have 3 more episodes exactly like this. First came some late night nausea and vomiting, then by the time the sun was coming up, the pain would set in, I’d take pain killers, antacids and ride out the worst of it curled in bed. (So no antibiotics, still didn’t know it was cholangitis)

Early 2018. Just came back from a 3 week European christmas trip, settling back into life/work/etc when on came another attack, only this time it felt less awful, but it also didn’t pass like the others. Then on the 3rd morning I got out of bed and immediately collapsed on the floor.

My partner took me straight to hospital where they poked and prodded and stabbed and found all my LFTs were deranged and bilirubin was 101. I was admitted immediately for what ended up being a 5 day stay where I was ultrasounded, MRI’d and biopsied (my 4th biopsy in total due to questions surrounding the original AIH diagnosis from years ago)

MRI clearly showed the PSC had not been kind over the last 7 years with one of the specialists describing it as “impressive” (At the time I wasn’t sure if this was good or bad)

While in hospital my LFTs stabilised again and they let me go, only this time with the knowledge of what cholangitis was and how to combat it when it shows.

2 weeks out of hospital again and I start getting back pain again, but no fevers this time around, no problems eating either. This confuses me a little, and I shrug it off as being poor posture from my awful work chair. Until the jaundice returned. No pain or any other problems, just yellow. Saw my hepatologist who put me back on antibiotics for a week, as she believed it was an infection returning. I took the full course of the antibiotics but the yellow seemed to get worse especially in my eyes although it’s sorta noticeable in my skin. Still no other major issues, no serious pain, no nausea/vomiting, although very very tired.

Which leads me up to today…I’m still very yellow, although not really in pain. My mental state on the other hand is shot… everything had been going so well for years, it’s all been a very rough landing.

So many of the questions/fears/anxieties I’d managed to overcome over the years have come smashing back down, not at all helped by re-visiting Dr Google. So I felt like it was time to reach out to actual real people who are living normal lives with PSC, not stupid research papers.

I feel like it might be my time for maybe a balloon or stent to get things moving again. The antibiotics have stopped the infections, but my bile still just ain’t moving. Is that a thing? I assume the pain/fever only comes when there’s an active infection and if the antibiotics have cleared that (for now) but there’s still a blockage or stricture then that could make jaundice without fever/pain? I’m reaching out to my hepatologist too but she’s very slow with her emails.

Well, thats my looong story and questions. I’ve undoubtedly missed something, but that’s the way things are. Am glad to be here. :slight_smile:

G’Day. You have picked a wonderful sight which i too stumbled across not long ago. The main two moderators who are no doubt about to respond are oracles of knowledge and share their own stories, lft results and even gross pictures but thats what it is all about.

Sorry to hear this has suddenly smashed you. I am hopefully a long way behind you as it looks like I have had this for over 5yrs myself. But as this forum will tell you there is no rhyme nor time when things will kick off in earnest so i am just trying to look after myself, live life to the fullest and see what happens. Hopefully get to my Don Bradman birthday (Aussie term for 99yrs) but time will tell.

Wont dribble on any further, you can read my post on my medical history and feel free to ask any questions.

Good luck and great to see another Aussie on this sight.

1 Like

Welcome from another aussie, a mother of a 17 year old young man recently diagnosed with PSC and ulcerative colitis. Do you have UC as well?

It sounds like you’re having a rough time. Others are more experienced here and should be able to offer you some words of wisdom.

My son’s levels are still dropping back to normal and he has no symptoms but if things start to heat up again, I will be looking for a specialist who is willing to give Vancomycin a go. There is an Australian Facebook group for people with PSC and you may be able to get information about who is willing to prescribe it. In some cases it seems to be well worth it. Are you on Urso? Some specialists recommend it, others not so much. There is also quite a lot of research on probiotics which can help reduce inflammatory processes in the body as they modulate the activity of immune cells called T cells. Good luck to you and tell us how you go.

Thanks for posting your story. You’ve really been through the wringer with your PSC. 4 biopsies, I’d be ready to kill someone over going through all that. I’m so sorry. Just a couple of questions for you to get started.

  1. Are you under the care of a hepatologist or just a regular GI doctor?
  2. Is your doctor a provider with a major transplant hospital?
  3. Have you ever had an ERCP?

If the answer to #1 and #2 are NO then you need to find a transplant hepatologist, have all your records transferred to he/she and place yourself totally under their care. PSC is not a disease that should be left with just a GI alone. It needs the care of a specialist.
If you haven’t had an ERCP by now and they are showing strictures from the MRI’s, I would certainly ask your hepatologist about having one done. Don’t let your local GI doctor do this though. This is a highly invasive procedure, there is the risk of pancreatitis which will lay you up in the hospital for sure. It needs to be done by a specialist in advanced endoscopy that does this procedure day in and day out. Once you get a good one, stay with the same doctor every time. He’s like a good car mechanic. Once he knows your duct system, he will know where all the little problem spots are and know how to handle them. If at all possible, I’d encourage you to ask that stents not be inserted. Hopefully they can balloon dilate the ducts and get them open again for you. Sometimes stents have to be used, but they can’t be left in too long or you risk infection. PSC doesn’t go away and it will just clog up the stent over time so keep that in mind as well.
We are here for you and willing to help in any way, just let us know your questions, etc. Do you know what your current MELD score is? That would be important to know. Take a look at your recent labs and give us a report if you will. Here’s a link to a MELD score calculator.

PSC 2011 / Liver Transplant 2015