Learning to live with PBC

[jtbowen]

I am having problems with my saliva glands hurting. Dry eyes, dry mouth

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It sounds like Sjogrens Syndrome talk to your dr about your symptoms. They say if you have 1 autoimmune disease you'll have another one or even more. I have Pbc and Sjogrens. I hope this helps.

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Yes, sounds like Sjogrens. I suffer "very severe " dry eye according to specialists. Also very dry skin & mouth. Abnormal salivary glands (diagnosed by scan) lip biopsy can confirm Sjogrens but there's absolutely nothing they can do about it. What you can start doing now is sctrict lid hygiene, wiping with water/baby shampoo or if you can afford it, lid wipes are easier & more soothing. I use heat goggles twice a day & then massage lids to release any gland blockages in lids. Sjogrens is a gland disease. I use drops every 15 minutes when at home, less when out because of inconvenience. I have tried everything & settled on Hylo Forte. Use preservative free whatever you choose. I started out w the cheap nasty drops my go prescribed and they exacerbated everything. I also use acumist lid spray while out & when they really feel like they are burning. . It's easy to use. I've had to stop wearing any eye makeup except on very rare occasions when I know I won't be out long. Drink plenty of water min 2 litres. For dry mouth; lemon. I make up lemon water every day and chew on when really dry. It stimulates saliva. Other people swear by certain mouth gels etc but my eyes are the biggest problem. Blink often, wear big sunglasses in sun and wind, moisture chamber glasses for computer work. My dry eye is worst when using the computer. We blink far less when using devices and computers. If you have the means to get it tested, do! I guess it's good to have definitive diagnosis. Hope this helps. Any questions, please feel free to ask!

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Ps. If you can get free/cheap prescriptions make sure you are assertive with doctors about prescribing. You need to go to an ophthalmologist to get them to recommend or maybe an optometrist can as well?