Itchy eyelids

Hello everyone,

I tested positive for AMA's in November. At the time I had elevated bilirubin and elevated liver enzymes. I had a liver biopsy and it came back "non-specific". My liver counts also went back to normal so they would not diagnose me with PBC at that time. For now I am to have repeat blood work every 6 months. The problem is I have many of the symptoms that I've had for several years. But recently (around the time I was tested for AMA's) my eyelids have started getting dry and extremely itchy. Recently it has also started under my eyes as well. Can anyone tell me if this is something they have experienced with PBC? My primary doctor wants me to see a different GI doctor to try to get treatment and I'm trying to figure out if it's worth it. This being another PBC related issue may be the push I need to pursue further medical treatment.

9 Replies

  • Hi my eyes are itchy too. However I have PBC and Sjogrens Syndrome which is another auto immune conditions which causes extreme dryness of the eyes mouth etc. It's possible you may have as well. It's diagnosed by rheumatology. Diane

  • Hi Autumnelmore, I have intensely itchy eyelids (sympathy!) and like Diane, also dry eye syndrome. Biopsy of my eyelid skin revealed general inflammatory processes, not sure if PBC-related, but likely to be auto-immune of some sort.

    l moisturise the skin with unperfumed lotion and use steroid cream sparingly when the irritation's driving me crazy. Also anti-histamines might help, or cold water cotton wool pads. I also use plain saline eye drops 'Minims' preservative-free for dry eyes; I also 'flush' my eyes and lids with this to refresh and cool them temporarily.

    Hope your PBC status turns out to be negative, (ask to be reviewed by hepatologist?) but we're all here for you if not. Best wishes.

  • Hello Aurumnelmore.

    Apparently a liver biopsy can diagnose PBC. I am not sure what measure (or titre as it is known) of the AMAs we have to have to have a diagnosis of PBC but I had a 'high titre' to give diagnosis of PBC late 2010. I went to see my GP with itching, was found to have higher than normal LFTs (the liver function test) and though I had a normal looking scan summer 2010 my hospital consultant took an antibodies blood test when I first saw him (the ANAs and also AMAs. ANAs was negative) and gave me the diagnosis.

    There is a condition as already stated that can cause dry eyes and/or mouth. (I've not developed but you can with PBC and I expect now with PBC.)

    If your LFTs are normal currently and your biopsy came back with no diagnosis of anything then it seems the norm for bloods to be repeated at intervals for any signs of changes. Could be that your bloods if currently normal might never become abnormal.

  • Re itchy eyes as others have said you can get drops from your Dr. It may be worth trying this half pint cooled boiled water to quarter teaspoon of Johnsons ( and it must be Johnsons) baby shampoo. Keep in fridge and dab on eyelids with cotton bud it really soothes the eyelids.

  • Hi Autumnelmore

    I get dry eyes and sometimes they itch like craxy. I was using Systane Ultra eye drops but it was not really giving me any comfort. Fortunately I had an appointment with the optician and on asking he recommend an eye bag which I have to say 2 months on is working really well for me.

    I no longer use eye drops either which is great.

    Seven years ago I saw a very dismissive GI specialist - I now have a really great hepatologist so if your primary doctor thinks you might benefit from a second opinion then you might get a better diagnosis. Try to get the recommended specialists name before booking an appointment so you can research him and find out where his specialty lays.

    best wishes

  • Hi Autumnelmore,

    I agree with ButterflyEi. If your GP wants you to see a different consultant, then get him to send you to a really good Liver consultant, and if possible, one who is a PBC specialist.

    NB If you want to say roughly/vaguely where you live, then quite a few of us may be able to suggest the 'best' folk we have seen, who happen to be near to you (though I think they should only be mentioned in 'private messages' ['PMs'] to you - which can easily be sent via this 'Health Unlocked' site).

    As others have said, the 'itchy eyes' may be Sjogrens Syndrome, another autoimmune condition. Your GP should have run tests to see if you had any other autoimmune conditions, as some people do have others alongside the PBC. He should also have ruled out other liver conditions. They won't diagnose PBC until the liver enzymes have been abnormal in a manner typical for PBC for about 6 months. I would push to see a PBC specialist if possible, and make sure that all other things have been ruled out.

    Take care, and try to have fun, enjoy life and treat yourself. Stress is the worst thing for all autoimmune conditions, so try to 'de-stress' as much as possible.

  • I have Sjogrens with PBC. I have had itchiness along the top of my eyelids so use Simple soothing eye balm night and morning and this helps. I also have Systane Balance eye drops. I borrowed my daughter`s eye mask recommended by the Optician which was soothing but a lot of faff!

  • Thank you everyone. I am from Northern Virginia so I'm sure I can find a good specialist in my area. I will do some research for sure. As far as the itching goes. It is not necessarily my eyes that itch buy my eyelids and around my eyelashes. It's just been so hard not being able to get a diagnosis when I know something is wrong.

  • Try looking up 'Blepharitis' on NHS Choices (UK website) for symptoms and treatment and see what you think.

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