Anyone experiencing dry eye with PBC? If s... - PBC Foundation

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Anyone experiencing dry eye with PBC? If so, what do you do about it? I have tried different drops but still have trouble.

dinnyd profile image
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dinnyd
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Val02 profile image
Val02

I dont have this but you should see your dr about it because you should be tested for Sjogren's Syndrome, which can be associated with PBC. I believe there is treatment for this but maybe someone will answer who has it and they will be able to give you the info you need.

dinnyd,

Good advice from Val02. I don't suffer from dry eyes but I know that in the US there is a prescription drug called Restasis that is highly recommended. It helps people produce more tears, although it takes a few weeks to kick in.

I mentioned this drug as I know an ophthalmologist that uses this to treat her dry eyes. She says that once it starts working a person can cut back on their dosage because they will start producing more tears.

In the UK this drug may be sold under a different name. I have no first-hand knowledge about this drug but hope this info helps.

Best of luck to you.

debmar profile image
debmar

I do and have been using Systane Lubricant eye drops ( long lasting) It does help but dosen't last along time. Good thing though, you can use it as often as you need. I get mine at Walmart..over the counter. Hope this helps :)

Forgot to mention that the eye doc also said that laying down and covering both eyes with a warm wet wash cloth can be soothing to the eyes. Won't work as well as eye drops but can be done along with using drops.

Hope you get lots of useful suggestions.

dinnyd profile image
dinnyd

Thanks everyone for the suggestions.

I have secondary sjogrens to Scleroderma, or could it be PBC? Hell, i dont know what's causing what any more. I use carbomer for my eyes with lacrilube at night, but have developed cracks in my tongue so eating spicy food etc is a no no, and i,m struggling with drinking alcohol now as it makes my mouth feel so dry.

boggyeyes profile image
boggyeyes

i have dry mouth aswell and was told to suck sugarfree pastilles but this doesnt help.My eyes are sore most of the time even though i have lacrilube at night and cellivisc drops during the day.

wongie profile image
wongie

Hi i was told by a friend that she was advised by an eye specialist to dilute a tiny drop of baby shampoo in water, this must be a very tiny drop in about half a pint of water. Then she uses a cotton bud, dips it in the solution and wipes the inside the bottom lid where the tear ducks are. This keeps the area clean and unblocked. She said she does this once a day and it has really helped.

Jtxx profile image
Jtxx

My eyes just feel a bit funny, like I need to blink hard to clear them or like you would be if caught in the wind (kind of gritty) and vision feels a bit funny at times. Consultant said this can be a side effect of PBC! Doctor says it could also be the steroids! Don't feel the need to use drops at the moment but it is useful to know what ones I would need should they get any worse. Thank you. X

exy21 profile image
exy21

I have sjogrens and have dry eyes and mouth. Use eye drops when really bad but since I read an article on high dose daily fish oils, hardly ever need too. Needs to be high EPA. Give it a go, I always prefer trying alternatives/ natural remedies first.

hopesprings profile image
hopesprings

Hi there, like you I tried all the drops and Actimist spray but my eyes were still itchy and scratchy. Then I read about gel tears and asked my Dr to prescribe. They work a treat as they coat the eye surface rather than running out of the corners, but with only one small tube on prescription are expensive. I asked in Boots the chemist and they sell Gel Tears, visco tears, at the pharmacy £4.50 ish a tube. I read that over time some drops and gels can scratch and damage the surface of the eye, these ones won't. Hope you find they help.

zipitydoo profile image
zipitydoo

I have dry eyes and dry mouth and have a spray for each as I cant use eye drops.

dinnyd profile image
dinnyd

Are Gel Tears available in the US? I am in Arizona. Thank you all so much for your suggestions. I am already using some of these drops, but it helps to know of some others to try. How much fish oil do you take exy21?

annscot profile image
annscot

Tried a few eye gels..carbomer works best for me.....constantly my mouth is dry so I chew gum which helps..also have a steroid mouth.

Flymccoll profile image
Flymccoll

tried loads of drops found systane helped - now gone on to systane ultra - can be used with soft contact lenses. Also got an eye bag which you heat in the microwave and put on the eyes - helps soothe - hope that gives you some relief - the baby shampoo trick helps if it is blepharitis.

Flymccoll profile image
Flymccoll

an update on eyes - my eyes have been getting slowly worse - optician was concerned enough to send me to the consultant at the hosp - who was tried putting in a plug in one of my tear ducts to try and keep the eyes moist. Srill early days. He also prescribed chloramphenicol for night use and Clinitas for day use. I would love to keep wearing my contact lenses but I think my days of this are numbered!!!! For info went back to using systane standard as the systane plus has preservatives which can add to the problem. any new ideas or things to try would be very welcome

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