Eye issue

[Laj457]

Just recently diagnosed with PBC very beginning stage on ursodiol and milk thistle . I have had red dry eyes for 5 weeks now . Could this be part of PBC or Meds?

[Benjaminev]

Being that you only experienced while on the medication than hopefully it will go away once your body get more adjusted to the medicine. PBC can also cause dry eyes but not likely to start same time as you begin meds.

[Laj457]

Thanks ! Looking for a PBC specialist in Dallas tx area . Any advice?

[butterflyEi in reply to Laj457]

Hi Laj457

I have dry eyes courtesy of PBC and use Systane Ultra gel and eyedrops. This seems to keep the eyes well lubricated and sore eyes rarely occur now.

Have you come across pbcers.org/ yet? They are based in Texas and may have a list of specialists in your area. I am in the UK but joined their membership quite some time ago. Also the PBC Foundation who host this site on Health Unlocked is very useful and membership is free to join, you can link through the Icon above. Once registered the members section has a wealth of information.

best wishes

[Hidden]

You can have dry eyes and mouth with PBC, when you see consultant ask them to test for sjogrins (sicca syndrome) I've not heard of it being caused by meds. However I had sjogrins before PBC so would not be able to tell.

[June9961]

Hi, dry eyes and mouth seem to be part and parcel of PBC. I have had PBC for 17 years but I have had both for the past 5 years or so. Got gel for mouth and drops for eyes.

[IOW-gal]

I also have dry eyes and mouth. Diagnosed in 2011. I have gel and drops for eyes and just drink water when mouth feels dry. I do believe dry mouth has affected my teeth though. My dentist said lack of saliva causes teeth problems.

[GrittyReads]

It could be sjogrens syndrome, as people who get PBC are also at risk of a range of other autoimmune conditions - what June and IOW describe, above, is probably Sjogrens, though it is strictly a separate condition. Sjogrens is caused by the presence of another sub-type of the autoimmune antibodies (AMAs) that are associated with PBC. Your Medics should have tested you for a whole range of other autoimmune conditions that are common to those who get PBC (lupus, sjogrens, Hashimoto's thyroid condition, plus more) and they should also have tested you thoroughly for all other liver conditions. My GP tested me for everything!!

However it could be something different, but associated with the PBC, or just a side-effect of the medication. Talk to the various PBC/Liver organisations suggested above, get their advice then go back to your medics - armed with proof/info and demand more checks.

[Laj457 in reply to GrittyReads]

Thanks ! I was checked for sjorgens, Ana send rate RF all were normal.

[Debbiem40]

I suffered with Uveitis last year, and ended up on steriod drops for 2 months. It can be caused by auto immune disease so please get it checked out by an eye specialist - by GP and my Optician were completely useless.

[Laj457 in reply to Debbiem40]

Did they get back to normal eventually?

[Debbiem40 in reply to Laj457]

Yes, after the 2 months of steriods, and has been fine since. Luckily it was only in my right eye - I had to keep pupil dilated for a week with other drops, and was a very strange experience!

[Laj457 in reply to Debbiem40]

My primary doctor thinks the urso has caused it talking to gi today . Do you live in texas

[Debbiem40 in reply to Laj457]

No, I'm in the UK.

[littysgirl]

I have had dry eyes for years but was only diagnosed with PBC last year. I also always have a glass of water with me because my mouth gets dry also, some days more than others. I have not been tested or diagnosed with Sjorgens. Does anyone know what the test for it is? And is there any treatment for it? I have an old friend who has had both, diagnosed about 10 years ago. It sounds like the two diseases go hand in hand. I have heard and read that once you have one autoimmune disease, the chances of getting more is pretty high.

As far as the dry eye, you need to treat that so that you don't damage your eyes. I carry a bottle of Systane lubricant drops in my purse and keep one on my bedside table. Don't use drops that take away the red. Only use lubricating drops. You should see an eye specialist who can recommend a brand of drops for you and keep track - let you know if he/she sees any damage being done. During my most recent eye visit with a new doctor, he saw something on the surface of my eyes and declared that I had dry eyes. I hadn't told him yet. This is the first time a doctor saw it - in the past I would mention it. That bothered me and I will now be more vigilant about using the drops. I used to just use them when I noticed that I was having trouble blinking. Now I'm using them at least three times a day as a preventative.