Anyone got PBC + Sjogrens Syndrome?

[lizzybeebee2003]

Hi all. I'm worried I've developed sjogrens syndrome. I have PBC and my eyes have been extremely dry for a couple of years, but nothing else. However, the skin on my face has suddenly gone really sore and dry/flaky. I really hope it's not SS. Does anyone know anything about it? Many thanks 😊

[Readlots]

Hi, my liver consultant did me a referral for Sjorgens. In the UK it’s rheumatologists who diagnose it (weird!) Same symptoms you’re describing. The rheumatologist said it isn’t Sjorgens, just my liver. I’ve started using moisturising eye drops recommended by an optician and moisturising toothpaste and xylimelts which have really helped. My dentist suggested them and my liver consultant said it was fine to use them. The rheumatologist said even if it had been Sjorgens, he’d have been treating it symptomaticaly too. Hope this helps.

[lizzybeebee2003 in reply to Readlots]

Thanks so much for your response, that really is very helpful. I suppose my question is.....if you have pbc and dry eyes does that mean you've developed sjogrens, or is dry eye just part of pbc? By the sound of it dry eyes can just be part of PBC then. That's reassuring!

[Readlots in reply to lizzybeebee2003]

Yes, my understanding is that dry eyes and mouth can just be part of PBC. And there are treatments available

[Poppygayle]

hi Lizzy I have PBC & Sjogrens I have had dry eyes and mouth for many years before being diagnosed with sjogrens I was told it goes hand in hand as part of PBC . I use eye drops for eyes and a mouth gel to help with moisture in the mouth. Eventually I asked for a blood test to confirm the diagnosis of sjogrens just so I knew one way or the other .

[lizzybeebee2003]

Thanks for your reply. With your Sjogrens are your only symptoms the dry eyes and mouth or do you have other issues? I'm very worried about Sjogrens as it sounds awful when you read about it 😕