PBC and PSC: Have any of you also been... - PBC Foundation

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PBC and PSC

amanda3296 profile image
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Have any of you also been diagnosed with PSC? I know it is extremely rare to have PBC and PSC, but my doctors believe I have both, I find out on August 3. This is the first time, I have been afraid while living with PBC. Any information or insight would be greatly appreciated.

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amanda3296 profile image
amanda3296
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bluetopia86 profile image
bluetopia86

I have posted a few times on this site. I too have been diagnosed with both pbc and psc. More or less figured it o in my own, by having doctors refer to both of the diseases and never really giving me much idea about which was which or if it was one or the other. Having both is known as overlap syndrome. Here are 3 types of autoimmune liver diseases, pbc,psc and autoimmune hepatitis. The more common overlap is with pbc and autoimmune hep. (I've done so much googling on this) try googling yourself, overlap syndrome with both primary biliary chirrosis and primary sclerosing cholangitis. Good luck. I am still trying to wrap my head around it, and the difference between the two.

in reply to bluetopia86

Hello. Not heard of having both the 'Ps'.

There are leaflets online from the British Liver Trust that covers both PSC and PBC. AS far as I can understand from them is that PBC makes the bile ducts start to vanish over time at variable rates in everyone but in PSC it is a case there is on-going bile duct damage.

I also noticed that certain symptoms that occur in liver conditions, in the both it appears that with one condition you might get those earlier than the other and vice-versa but again everyone is different and doesn't get all the same symptons.

britishlivertrust.org.uk/pu...

amanda3296 profile image
amanda3296 in reply to bluetopia86

I have not been diagnosed with PSC yet, but my doctor believes I have it due to the results of a recent Ultrasound. I am having a MRCP done next week, along with a colonoscopy.

Are you on a wait list for a transplant?

bluetopia86 profile image
bluetopia86 in reply to amanda3296

I had my transplant almost 8 years ago, I already had chirrosis when they found the disease. Didn't even know anything was wrong with my liver until I was in surgery to get my gallbladder removed. Then everything just went crazy from there.

Had 2 transplants about a year, year 1/2 later. Drew a clot on the first liver had to get a second immediately. They were baffled by my case, given my age,lack of symptoms and progression of the disease. Through it all I remember both terms ALWAYS being used, pbc and psc. Was never directly told it was overlap but they always talked about both diseases as though that was the case. Good luck with your tests and the future! Ask your doctors as many questions as you need and if you aren't satisfied never be hesitant to get second or third opinions. Again, best of luck to you!

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PBCFoundationPBC Foundation

Hi Amanda,

I have sent you a private message

Best Wishes

PBC Foundation

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