PBC Foundation

Pain in Eyes? Dry Eye maybe?

Hi Everyone,

I have limited Wifi to get online since recently selling my home to size down and still haven't found what I need. Meanwhile I have missed much of what has been happening here and have a few questions. Since my going on Urso 500 mg 2x a day I have struggled with something I wasn't expecting pain in my eyes, it occurred to me that maybe it was dry eyes. Does anyone else experience this? OH there is good news my LFT were down after only 1 month.

Thanks for being here

Dee

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Hello DeeSree.

Your 'dry eyes' don't sound like a side-effect of urso (to me) but possibly a sympton with having PBC.

When I first started taking urso December 2010 I developed a few temporary side-effects:- bit of bloating, heartburn and I thought the itch was worse. I also started to develop constipation that I never had pre-urso.

I think there is an auto-immune condition known as Sjorgen's Syndrome that can develop and it causes dry eyes and dry mouth. Seems on this site something that can be common with PBC.

If you are concerned it might be worth contacting your consultant to ask but as far as I know I've not seen dry eyes as a side-effect on the patient info leaflets here in the UK with the urso.

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Hello I suffer with dry eyes it's a symptom of PBC I am afraid,glad to hear LFT has come down

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I have the dry eyes and mouth, however I don't suffer eye pain just a gritty feeling at times.

I would go to see an optician or your doctor to get this looked at just to make sure, if it's pbc related I think you need to have regular checks on dry eyes.

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I have PBC and I also have dry eyes which get sore, usually if I spend too much time on the laptop/tablet or reading. My optician first recommended drops/spray for this and then, when I had to see an opthomologist for a related eye problem, he prescribed eye drops for me to use daily. Whether the painful eyes are part of of your PBC or not you should get them checked - your sight is precious and should be looked after!

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A disturbing and surprising nugget of information that I found out last week was that there are various chemicals that manufacturers are not allowed to put into contact lens solutions but amazingly they are not prohibited from putting them into eye drops.

This info came from my optometrist. He said to be careful buying any eye drops off the shelves at a chemist. Best to get them prescribed by a doctor or if no particular medical condition is involved, from an optometrist/optician.

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Yes !!! Always buy preservative free eye drops ☺️

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Any recommendations?

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Wonderful news about your LFTs!

I have dry eyes also. They feel like my eye lid is sticking to my eye ball, and itch horribly. I was told by my hepatologist that it is a very common symptom of PBC,. I actually had the itchy eyes before I was taking Urso. My eye doctor suggested using "clear eyes" 3 times a day. It has really helped! But i would urge you to see an eye doctor. I so agree with 58goose. Vision is so precious! Hope you continue to improve...all the best

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Yes thank you! So far other than that eye issue I think I have had very few side effects from Urso. Oh I did gain some weight but that started before Urso while I was getting my home ready to sell, It sold in 3 days though so yippee!

I will get my eyes checked though you are right.

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I also suffer with dry eyes. My GP prescribed Viscotears Gel along with Celluvisc drops. These have helped considerably and you can use the drops as often as is necessary.

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Hello,

Yes, dry eyes is part of PBC but also other auto immune conditions such as Sjogrens. You could ask your GP / consultant to test for Sjogrens antibodies. X

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Thanks everyone who responded about my dry eye and pains in my eye issues. I had laser surgery about 4 years ago and after several attempts they finally got it right. Didn't have to wear glasses to read or see distance. I have mono vision. Up until I began taking the Urso I didn't have this issue with the eye pain and the dryness in my eyes. So I thought it was a side effect of the Urso. Now I wonder if knowing now I have had PBC for years was the reason I was so difficult getting my eyes right to start with. Anyway, I do worry about my eyes because its become an issue and I have to wear glasses again to read fine print now. So bummer.. I am going to get my eyes checked and will see my Gastro doctor in Aug where he will also check my LTF for the 3 month check. My internist always does the LTF because I have had issues with this for a long time. That was how I found out I was normal. We have been trying for over a year to get my Vitamin D up and it is still very low.

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Hi DeeSree, My eyes are always playing me up, soreness, dry, lumpy lids, drives me mad, and sometimes pain, Im on Urso, been on it for about 3 years, put drops in for dryness, but having said that my skin all over is dry, itchy scalp, and so on, just wish there was a magic formula for us all to take . Mylo

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I was diagnosed with chronic dry eyes 27 yrs ago. Dr said use Systane eye drops. I never used it daily. Diagnosed with PBC June 2017 & for the past 3 or 4 months I wake up with red eyes. Sometimes they sort of burn. But as the day goes by the redness mostly goes away. I have started using Systane again. Not sure it’s helping but I do not have Sjogrens.

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