Surprise Surprise: As if life is not... - PBC Foundation

PBC Foundation

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Surprise Surprise


As if life is not challenging enough with PBC now I have also been diagnosed with

Sjogren's Syndrome. It is like living with the flu 24/7. Please do not get me wrong I am thankful that I am still kicking and that I can chose joy no matter my circumstances. Some days are just tougher than others, well one step in front of the other, one breath at a time. Thank you for letting me share. Lori

8 Replies


I'm so sorry to hear of your new diagnosis. Ugh! 😔

From day one on this forum I was told that AI's beget other AI's. I've been scared to get some newer symptoms checked out (terrible dry eyes and mouth) cause I don't think I can emotionally handle "one more thing." But you are right. We can "choose joy no matter what our circumstances." Thank you for that reminder! ❤

What test did you take to confirm Sjogren's? What are your symptoms? What do they do for it?

I'm seeing a functional medicine doctor later this month. Free consultation but, $3,000 for the year and only labs are covered by insurance. I'm doing this because I'm wanting to get to the root of my issues with this PBC and RA. My Dequervain's tendonitis slowly went away by itself 2 months ago.

I'm hoping they don't find Sjogrens. 😔 If they should, thanks for the encouragement that "I can deal with it. 💪"

I'm having a rough morning. Eyes hurt bad and my head feels full! Weather changes here in Kansas. Hopefully it's just sinuses.

Try and enjoy your day ❤


lorilee58 in reply to Ktltel

Thank you Stella, it was my liver specialist that diagnosed the Sjogren's Syndrome and the pieces actually fell together for me , the dry eye (it is like nothing that I have experienced), dry mouth, the constant sinus issues, pains in various joints and muscles, night sweats, fever, swollen glands... the list goes on. I need to see a eye specialist, a RA specialist, more visits to the dentist and follow up with the liver specialist and my family MD. I am thankful for insurance and modern medicine to cope with all the issues.

So sorry you are not feeling well, yes weather has been crazy here in Nevada also, you take care and I always enjoy your post, they are a source of strength for me. It is nice to know that we are not alone in our struggles. Keep Smiling!! Lori

My-life in reply to lorilee58

Evetyone try to have a good day. I went to my new regular Dr. Whom is suppose to get me into a Kidney dr. I have very low levels of sodium. While I was there man a pain on the liver area didnt help. I like New Mexico its drier than the Northwest. Not as many flowers. Sinus city running. Lol

Hi lorilee l was diagnosed with sjogrens and lupus 12 years ago and pbc in February pbc usually go hand in hand with sjogrens or lupus but sometimes AIs dont show up for years

Hi @lorilee58

Sorry to read of another AI. In the UK around London when something occured in groups we would say "its like London buses they all come along at once"!

It is tough but you sound really positive and there is lots of support on here.

best wishes

One tiny step sometimes. If one of the doctors had it iam sure that eould be the one I would go to. Love to hear not the only one to rant.

I'll be curious to follow this thread. I have a friend who was diagnosed with both Sjogrens and PBC about 15 years ago. I was diagnosed with PBC about three years ago and suspect I also have Sjogrens but have not had it diagnosed. It's my understanding that there's not much that can be done with the Sjogrens other than treat the symptoms - which I'm already doing. If I'm wrong and there is actually a treatment for it, then I'd like to know.

EileenUSA in reply to littysgirl

I'm in the same position- I suspect Sjogrens but haven't been tested. I'm not clear on what the actual "test" is? Or is it just diagnosed after ruling other things out that could cause the symptoms? And is there treatment beyond managing symptoms?

one thing after another it seems.. oh boy...

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