PSC flare ups?: Hi, this is my first... - British Liver Trust

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PSC flare ups?

Daystrom profile image
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Hi, this is my first post here, I stumbled across this site whilst googling about and it had what seemed some great information on the liver and general and PSC in particular (having an MRCP this coming Sunday). Anyway, I won't get into too much backstory yet as I am feeling pretty gross for the past two days, but I just wanted to ask what a PSC flare up (acute cholangitis) felt like? I have been having ruq pain off and on for the past few years. It feels like a pinch (incidentally it was my use of that search term which first brought me here). Occasionally the pain would spike, move into the back and shoulder and I would get nausea, loss of appetite and an itch. After several weeks (2-8) it generally subsides, the symptoms resolve and all is well. They have done bloods (all fine), and an US and CT (with and without contrast). In December 2019 they went so far as to take out my gallbladder because they found polyps in it and the gp at the clinic thought they might be the cause, but this did not help (in fact it was whilst healing from this that the first major attack or symptoms took place, including the itch). Since then I have had an attack or flare up of these same symptoms about every 6 months or so, give or take. I was recently referred to a new GI specialist and it was him who, after seeing my UC diagnosis from 2004 in my chart and after hearing the symptoms which seemed to come on as 'attacks' or 'flare ups', first suggested the possibility of PSC and sent in the request for the MRCP.

So anyway, back to the attacks. As I said, my pain levels spike, I get really nauseated, lose my appetite, lose weight, and become itchy, especially on my hands and feet. This most recent flare up has been the most painful to date and has me a little worried - it feels like someone stabbed me in the back and moving around is a little uncomfortable at times). Again, at this point I have no idea what this actually is, but it was the first illness which seems to fit all of the symptoms and certainly better fits the lack of evidence in the bloods - I understand that ALP and GGT are often elevated, but not always. Is this in fact true? Also, if this is PSC and this is a flare up, at what point should Does someone go to the ER (something I dread)?

Anyway, I hope this all just turns out to be a rogue stone or some such, but this certainly looks like a great resource, certainly well beyond what our MSI (our version of your NHS) has on offer.

Thanks so much for your time.

Regards,

Ray

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Daystrom
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Jow27 profile image
Jow27

Hi Ray, just completed a search on PSC and came across your post. I am waiting for the results of an MRCP to determine if I have PSC. Please can I ask if you have been diagnosed with PSC or found out what was causing your problems and if your LFTs were all normal. Thanks

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