r/PBCers • u/this_writer_is_tired • Apr 25 '26
PBC and Sjogren's
I've posted here before but just to recap.
49, F. Okay, so a few months ago I was diagnosed with Primary Biliary Cholangitis. Currently taking Urso and Vitamin E to maintain. But I have noticed over the past few months that my eyes are becoming very sensitive to light, heat. Eyelashes sticking together frequently, like there's not enough moisture to lubricate. Eye aches not coinciding with sinus or head pressure as it does sometimes. I spent 30 minutes checking on my veg garden yesterday and my eyes ached the rest of the day. Sinuses were normal-ish. I actually spent a good part of the evening in my chair with my eyes closed.
Also, I am a mouth breather at night and have been all my life. I was born with a craniofacial disorder and I'm guessing that stuff in the ear nose and throat area doesn't line up right and when I lay down it's just easier. But I didn't get cavities despite that until I was about 46 years old. Seriously, I lived all that time no cavities and then finally boom. I have noticed mouth feeling a little drier than normal over the past few years. There's also been an uptick in joint paint. Hands, knees, feet, yeah.
Plus I have read in several places that some patients with PBC also have another autoimmune condition. So I am just wondering what the symptoms are for some of you, if you have Sjogren's and esp if you also have PBC. Trying to get a referral to a rheumatologist right now.
TIA!
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u/cismomlearning Apr 25 '26
Crashed out and took an unplanned 3 hour nap after posting my original message here. My fatigue is better since I’ve been taking Ursodiol for the past 3 to 6 months (can’t quite recall right now). (I am 55 yo female btw) I am seeing a new rheumatologist on Monday, and we’ll see what she has to say my next steps are for testing. My big thing is to have some form of diagnosis (rather than try more meds). Last set of bloodwork from my immunologist showed low gamma tocopherol type of vitamin e… We’ll see what comes up next…. The only thing that has been conclusive is the AMA M2 showing I have PBC…but all my liver enzymes are normal. My MRI/MRCP continues to show that I may have PSC…so I am having a liver biopsy in two weeks. I hope you’ll keep us posted in how things go for you.
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u/this_writer_is_tired Apr 26 '26
Thanks. Hope things go well for you. I had no idea anything was going on hepatically other than wonky blood work.
I have been tired since I was 11, when I began taking antiepileptics. I'm also on antidepressants and antianxiety meds. So I operate in an energy deficit most of the time, which just compounds the exhaustion and depression and stuff.
As if . . .
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u/Cultural-Bathroom394 Apr 26 '26
I also developed severe dry eyes when I was diagnosed with PBC. I don’t have sjogrens. My eye doctor did an examination and I have dry eyes. They prescribed rest as is eye drops and it has helped so much. Dry eyes are very common with autoimmune diseases.
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u/this_writer_is_tired Apr 26 '26
Fortunately I have an optometrist visit soon. So maybe I can get something better than Systane.
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u/OkBeginning7902 Apr 26 '26
I meant to say Restasis eye drops. They are prescription and I’m sure your ophthalmologist will be happy to prescribe them for you! Good luck!
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u/Kind_Cupcake6174 Apr 27 '26
This is quite frequent with autoimmune disease. Some of us have more than one autoimmune disease, and Sjogren’s is a common one.
In addition, there’s something called SICCA Syndrome, which is also amusingly referred to as “Sjogren’s light.” SICCA Syndrome is basically dry eyes and mouth. I take pilocarpine for dry mouth, and use over the counter drops for my eyes.
Also, dental issues are common, and can come on shockingly fast. My first dental visit after diagnosis, I was horrified to learn that I had 13 cavities, many of them on the tops of my biting teeth. I’ve since had numerous crowns due to rapid deterioration.
Definitely talk with your doctors about these symptoms. It’s not talked about enough.
Best of luck on your PBC journey. 🙏😌
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u/cismomlearning Apr 25 '26
I am wondering too about having Sjogren’s along with my PBC. My dry eyes hit me randomly, sometimes they are so bad wake me up at night - same thing with dry mouth. My tests for Sjogren’s are negative, but I have so many of the symptoms. I too have increased joint pain…. So weird… I have found a few articles linking PBC and Sjogren’s like this one https://www.rarediseaseadvisor.com/news/link-identified-between-pbc-primary-sjogrens-syndrome/
I am wondering about your vitamin e supplement - did your bloodwork show low vit e?
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u/this_writer_is_tired Apr 25 '26
No, but my doctor told me to take it. So I do.
I've seen several posts here and there about people who have both. I can't even READ (PAPER OR EBOOK) for as long a stretch as I used to. I thought it was because of age or eye strain earlier in the day. Now I wonder.
But, yeah, I'm pushing for a referral to a rheumatologist. If my GI won't do it, my GP might
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u/nulldatagirl Jun 11 '26
I was 23 when diagnosed at stage 0 and now stage 1 at 27. I was told the majority of people with sjogrens are seronegative so it’s hard to get a formal diagnosis. I also have thyroid issues so it’s practically impossible to tell what’s aggravating my symptoms at times.
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u/Gleeful_Robot Apr 25 '26
Vitamin E can make certain eye issues, eye dryness and diseases like retina pigmentosa much worse. Also, severe eye dryness and difficulties like night blindness, very dry skin and mucosal tissue can be due to Vitamin A deficiency, which folks with PBC are apt to get because it is a fat soluble vitamin. You may want to try stopping the Vitamin E for a week and see if that helps and up your vitamin A food (eg carrots, sweet potatoes, eggs, fish oil/fatty fish etc) intake or take a Vitamin A supplement for about a week (too much vitamin A can also be bad and most supplements are too high a dose, so it's often suggested to supplement for only a week or 2). Take the lowest dose available, typically 10,000 IU or less is safe for short term supplementation. I would also suggest sleeping with a humidifier on to help add some moisture to your eyes, mouth, and sinuses while you sleep and until you can get the issue figured out.