I am hoping that anyone will help regarding my eyes. For the last 7 weeks I have had dry sore eyes (even my eyeballs hurt) I have been to my gp twice and also to an optician who says my eyes are fine. I am on 10mg of Ocaliva a day this was increased about 10 weeks ago that is the only medication I am on for PBC. My gp did give me drops and something to put in at night but they don’t seem to be helping. I really am at my wits end. I have an appointment at the Queen Elizabeth in Birmingham on Monday just hope they can do something.
Any advice would be appreciated.
Thanks x
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Jayne1863
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Quite a few of us with PBC suffer with Sjorgrens (not sure on the spelling) or dry eye syndrome and it looks like you have covered these possibilities with your GP and optician. I never found the night gunge very helpful but I do use eye drops during the day. I also clean my eyes with Optrex. I used to use a warm mask which I found from a blepharitis site and I wonder in between now and your visit whether a warm damp flannel over your eyes would be something to try interim.
The only other thing I can think of - do you have an eye A&E at your local hospital? As it is the weekend they may be able to offer some advice.
Were you a non responder to URSO that you are only on Ocaliva? I have not read any of the side effects for Ocaliva, is this on the patient information leaflet (PIL)?
Hope someone can come along soon with a better idea. Good luck for Monday.
Hi, I’m recently diagnosed and have been on Urso for two months. My eyes are really sore and itchy too. I think this is one of the symptoms of PBC, but I’m wondering if the Urso is making it worse!!! My GP has given me drops for dry eyes, ( Hypromellose) it doesn’t really help much. I’m wondering if it’s a bit of hay fever too. I’m having an endoscopy in a couple of weeks and a fibroscan in October. Good luck with it all. Xx
Definitely check yourself for Sjögren's Syndrome. I've been diagnosed with PBC many years ago and then subsequently with Sjögren's. My eyes feel better now (since my health generally improved) but I remember suffering from pain and dryness too. All the best Jayne!
Domenia70 - it was same for me - when I cut down added sugar as far as possible it made a big difference. Any time that I eat a sugary thing, I'll wake the next day with gritty eyes.
Thanks everyone. I did think perhaps I have Sjorgrens and my blood test said there is inflammation somewhere but because I have no joint pain only muscle and bone pain my gp won’t refer me.
Jayne1863 That's poor practice by your GP. PBC comes with sicca syndrome often, dry eyes, mouth and any part of your body that depends on a gland to secrete fluid. I hope you mention this at your appointment on Monday. Relief of symptoms is regarded as one of the top responses to PBC, because there is so little other treatment option. My eyes and mouth were dry, not excessively so, but Sjogren's diagnosis was made on biopsy and can be made less invasively. You could ask your hepatologist to refer you to oral medicine department directly, or for him to advise your gp to make the referral. Dry eyes isn't good, and neither is worrying that something important is being overlooked. Many people recommend viscotears who find that hypomellose drops made them worse.
hi i also have really dry eyes, most of the time it feels like my eye balls are stuck to the inside of my eye lids and I'm always squeezing them shut to try to get some moisture, i have tried so so many eye solutions for dry eyes on and off prescription im currently trying hypo san extra which first week seemed to help but not so much now. the strange thing is they water quite a lot at times, which can't help them. i feel for everyone who also suffers this
The advice you've been given here is excellent. I think it's your right to pursue a diagnosis, but symptom relief is key in the first place. Your GP should help you find the 'tear replacement drops' that suit you. You can use a more long-lasting, oily one at night because it doesn't matter if it makes vision a bit blurry then. Daytime I use single use 'Minims' which have no preservatives because I found that drops with preservatives made my eyes sore. Quite a variety can be bought OTC so you could experiment a bit. Best wishes and don't worry!
Hi , I've had PBC for 9 yrs and have had a problem with my eyes being dry , itchy and sore for yrs , neither my GP or my optician could find anything wrong , it wasn't until i was referred to St James in leeds ( as im now on the transplant list ) that i was diagnosed with sjogrens syndrome , i also suffer with a very dry mouth too now and im prone to getting oral thrush . I find gels or drops are of very minimal help for me , I bathe my eyes every morning with cool boiled water which helps more as my tear ducts are now blocked , i have had one of thrm unblocked only for it to block again and its left an ugly scar so i just stick with bathing them . How long have you had PBC ? With regards to yr muscle and bone pain have you had a dexo scan ? I have had two in the last 5 yrs as I have bone and muscle wastage PBC can cause osteoporosis at i dont have that but i do have osteoarthritis and now dont absorb fat, vit c or vit D so they keep an eye on my bones , i would insist on a dexo scan if i was you , my bone mass has deteriated so I get high doeses of vitamins and have a dietician . Make yr GP listen they are not always clued up with regards to the side effects of PBC . Take care X
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