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Primary Sclerosing Cholangitis (PSC) - Online Support Group

New member, PSC 8 years

Hey there!

I’m Kate and I currently live in the US, Houston to be specific. I’m an Australian expat and we’ve been here 2 years. I was diagnosed with PSC 8 years ago, and I was fortunate enough that it was picked up very early on a routine blood test when I was a sick with gladular fever. I had all the subsequent biopsy, MRCP, etc in order to confirm diagnosis. I made lifestyle changes and just got on with life. I don’t have UC or IBD so I count myself very lucky.

I have a beautiful 4 yr old boy with my husband however suffered from obstetric cholestasis in pregnancy which was brutal. My liver enzymes have remained stable but chronically inflamed up until about 6 months ago.

Bilirubin currently at 2.9 mg/dl
albumin 36 g/l
ALT 369 u/l
AST 289 u/l
ALP 974 u/l
GGT 560 u/l

My husband and I are now about to start our relocation back to Australia as my specialist in Australia wants me to start the vancomycin protocol within the next 12 months before things deteriorate further. The risks outweigh the potential reward of extending my own liver life before transplant is needed. And to be closer for more regular testing. (Healthcare in the US even with insurance is beyond our means long term).

For now, I’m just taking things as the come, no sense in worrying about things before they arise. Shit happens, and it could be worse so I’m thankful.

Kate, that is a good philosophy. PSC will test your patience, stamina and sense of humor. But we have to be ready for the symptoms when they arise. And they will.
Jeff

Kate,
It sounds like you have a good plan. Your numbers aren’t too bad presently and I hope the Vanco will help keep those numbers down for a very long time. It is important to stay on top of labs at least every 6 months. I wish you and your husband a safe transition back to Australia. We just had a family move to our church here in North Carolina from Australia for 2 or 3 years. He was saying they had just ended their winter and now have come here as ours is beginning. Take care and do keep in touch with the group.

Mark

Did you start on Uroso? I have a similar situation and my labs were very close to that and high dose Urso settled everything down.

I did, when i was first diagnosed. But it didn’t change much. I was on it for about 6 months with little to no improvement, he doesn’t think urso is the answer. It’s not the liver enzymes and inflammation that concerns me or my specialist. I now have further scarring and overall deterioration of the bile ducts and liver. Urso isn’t going to fix that.

It is for sure not a one size fits all disease for sure. I have also made some differences with changing my diet. Like giving up dairy and gluten. This made an eyebrow raising decrease in labs too. And probiotics also.