Dry eyes

[lesbud1]

Does anyone have any advice on how to treat very dry eyes please?

[Brackie]

Hi Lesbud, l have had dry eyes for many years but much better controlled now. Main help is Xailin applied just before sleep every night. Try and keep away from air conditioning and air blowers. On my wood burner and radiators l place a small bowl of water which l replenish every day. On bad days l use eye drops every hour - being outside always seems to help. My optician also said there was a small procedure to help the tear ducts but l’ve not felt l need now as so much more under control. Best of luck xx

[smileyface1 in reply to Brackie]

I had to have tear duct surgery because my eyes were extremely bad. It helped a lot, but now I still have to use Refresh eye drops (get them at Sam's )many times during the day and night. Also, the Refresh ointment is very soothing at night. There are other brands but I tend to like Refresh.

[SusieW2 in reply to Brackie]

Can you control you air filtration? If the inside air bothers you more you could address that and also a humidifier.

[Sjanec]

Hi , I have had dry eyes for years as well. As Brackie said dry atmosphere does not help. I have had 2 operations on my eyes for my tear ducts and had all of them cauterised, which has helped but still need regular drops night and day. I use baby extra sensitive wipes to ensure eye lashes etc stay clean as any irritation does not help. Your gp can also help with different eye drops . Good luck x

[LittleSteve]

Hi sorry to hear about your eyes. I've had Sjogrens 16 years and eyes been major problem. Gp referred me to eye hospital in the end. Punctual plugs did not work as the small amount of lubrication I am producing does not have the right properties so maybe you could ask for referral too. They put me on donor eye drops which have literally been a game changer. I still have dry eyes but not always so painful and Haicin at night helps too. Also on Evolve drops during day with the donor drops so between the 3 I am much more comfortable. Donor eye drops very expensive and I am extremely lucky to be on them but if anyone's eyes are that bad ask to be concidered. Hope this helps.

[dg70]

Eye drops & oil spray (like actimist)(several times a day), hot compress (usb or microwave eye mask once or twice a day for 10 mins).

Pilocarpine medication has been excellent and made a big difference to soreness (Rheumatologist prescribed) . I wear motorcycle sunglasses (£16 or so and the only thing that stopped the tearing) bought from amazon to cut out wind and sun on my eyes when I'm out walking (they have a foam seal inside the lenses and uv protective). You can use safety glasses over normal glasses too if you wear glasses to cut out wind or plastic side panels that slide onto the arm of your glasses for some protection.

Having an all round check at least once a year (or more) helps from an Ophthalmologist and having your Meibomian glands cleared by them if needed (some are getting the new IPL therapy equipment rather than tweezer squeeze! ) .

It's a constant battle and I'm quite new to it too. I agree dry air indoors is not good. I have a small humidifier next to me when I work by my desk and when I relax at night by the bed (aiming for at least 50% humidity indoors). The pain and soreness is bearable now. All good fun, see what works best for you. There are some good Sjogrens websites with loads of info. I have an American friend with Sjogrens too and they are more advanced in diagnosis and advice than the UK so finding good professionals to go to is not quite so easy here.

🙂

[DJK99]

Hello - well I've had sicca/sjogrens (depends who I see at Ophthalmology) for about a 6yrs now, probably all my life to be honest as always used eye drops since teenager years (am 59 in Feb!). I have lupus too, raynauds etc etc.

I started off with Hylo forte drops prescribed by Eye A&E (but you can purchase these type of preservative free drops in Boots etc, or get your GP to prescribe or your opthalmologist if you are seeing one) - they are a bigger box that you're average drops.

Then had to move on to Carbomer drops and Hylo Night (ointment) as my eye lids were completely sticking to my eyeballs at night. Still happens however, so after trying punctual plugs (put in by ophthalmology) and this not working, am about to have bilateral punctual cautering. In fact am going to put a post on this site for any idea of what to expect.. I'm a bit of a wuss although I don't think anyone relishes having people mess in their eyes whilst awake.

I also have VisuXL gel prescribed and Irkevis for just before bed.. think that's an anti-inflammatory product. Didn't do what Opthalmoligist Dry Eye Specialist was hoping.

Also I bought a humidifier which needs to be on the whole time - 24/7. A bit of a pain as you have to clean it out thoroughly each week as it gets rather nasty inside... don't use essential oils with it as it killed my poor eyes. If you don't want to fork out for one (and get a good one as no point getting something inferior if you can afford) I put wet rags on my radiators and leave bowls of water on top which helps. And keep your window open to let natural moisture come in..

Also - drink at least 2.5 litres of water (not coffee or beer) a day... if you are a man then 3 litres. I fill up a litre bottle from my Nikken Waterfall (recommended by an previous acupuncturist as she said my body isn't absorbing water properly... er no, I was born with ridiculously dry skin and rashes etc.. and I can never drink enough as always thirsty). You probably have all this too along with all the other delightful sjogrens symptoms..

Eat oily fish once a week and lots of fruit and veg each day. Go outside now and then if you can, although I know its difficult if you have lots of joint etc pain as I do.. but makes a big difference even to keep the windows open.

Hope that helps - there are tons of great sites to give you advice - but I think those on here have probably helped hugely!

All the best, keep as safe as possible out there. D

[lesbud1]

Many thanks for all the great advice. I too have my lids sticking to my eyeballs at night and it is really painful to open my eyes. I do use some gel but it doesn't always work.

[LindyK]

Ask your ophthalmologist to cauterize all four tear ducts. It helped me immensely, more than any other measure taken.

[micheleinnaples]

My Optometrist prescribed Xiidra. It is an expensive prescription but you can get a FREE 90 day prescription from Novartis. My doc gave me a card and it's super easy to apply for. There has been progress in using these drops. I wish I could say the same for my dry mouth/lips! Hope this helps!

[micheleinnaples]

My Eye Doc prescribed Xiidra and it seems to work. I received a “free” 90 day prescription from the drug manufacturer. I use them twice a day, one drop in each eye. After the freebies, it’s going to cost $750.00 for a 90 day prescription. That ain’t happening! I’ll have to go to battle with the drug company which I think is Novartis. Hope this helps!