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PBC Foundation
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Pbc

Hi all

I've had pbc for 2 years no symptoms as yet just dry eyes I'm looking in to getting a tatoo is there one for pbc?

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Google PBC awareness ribbon (sorry tried to share link but it's not working for me) I'm 8 years own the line and dry eyes is my only symptom too.

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opps DOWN the line

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Ok thank you are take a look

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pbcers.org/event/awarenessd...

Never heard of one, perhaps you could design one.

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Hi someone on here said I have to Google pbc awareness and it should come up thank you anyway

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I put the link for you, in the above post.

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Thank you

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Hi candy just looked on the link it's great I suppose the new shirts will come out in September with 2019 on it's a fab site thank you

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Can I ask what symptoms you get with your dry eyes. My eyes water like crazy and I believe its because I have dry eyes. Do you have any medication for it?

I've been symptom free (apart from this) for 16 years!

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This is good to know that you are symptom free for 16 years! I have dry eyes too. Can you get tear plugs at the ophthalmologist to resolve the dry eye issue? Or use artificial tears & eye gel for overnight to lubricate. These were what my ophthalmologist recommended for dry eyes.

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Hi yes thay water all the time fill constantly dry its horrible

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Thank you that helps

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Hi no I don't take anything

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Hi just very dry and watery I don't take anything for them it did go away but it's back

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My GP gave me some drops but to be honest they don't really make much difference. I'm so fed up of having wet eye lids!

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There is an eye gel that you can use for overnight to lubricate as well. It is over the counter, no prescription needed.

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Yes I no it's horrible having dry eyes all the time

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Oh ok thank you. I have my 6 monthly check up at the Liver clinic on monday so I'll see what they say.

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Also ask about eye plugs which can be inserted into your tear ducts to maintain moisture. The ophthalmologist can put them in.

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6 monthly check up blimey since I've been diagnosed I've had to wait 2 years still waiting for a appointment it's a joke yes thank you that would be very helpful

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Really? I used to have 12 month check ups, but the last couple of years they've been monitoring me every 6, I think they think Urso isn't working, so keep trying me on different amounts etc., I'm lucky though, I'm in Birmingham so I go to the QE and they have a fabulous liver outpatients. Where do you live? How come you haven't seen anyone since diagnosis? Who diagnosed you your GP?

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I lived in hayling island at the time my gp diagnosed me then I was under queen Alexandra hospital then moved living in chichester under st Richard's hospital oh that's not good I wonder why your not responding to it wot else have thay tried ?

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Well, I wasn't taking it properly, hated taking the tablets and would always throw one up and would "forget" to take it at weekends etc. Anyway, so they've put me on a liquid version, which is much easier to take. And they've upped the amount I have so I'm at the top limit that I can take.

I hope you get an appointment soon. Can your GP not refer you again?

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Well at least that's working better for you yes the gp has referred me but still waiting

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Pbc symbol is the polar bear as far as I know.

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I think it's a green ribbon when I looked but thank you

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