Sjogren eye problems: my eyes seem to be getting... - LUPUS UK

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Sjogren eye problems

Matt80
Matt80

my eyes seem to be getting worse and more dry and red nearly every other week already on Hydroxychloroquine and Hylo forte 4 times a day nothing working can anyone suggest something else please ?

SLE Rheumatoid Chronic fatigue

12 Replies
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There are a number of different eye drops/ ointments available. It took me some time to find which one helped but isn’t perfect. I’m sure others with longer experience than I have can give better suggestions

Paul_Howard
Paul_HowardAdministrator

Hi Matt80,

We have an article about dry eyes on our website which contains lots of information and recommendations from people with personal experience. You may find it helpful - lupusuk.org.uk/dry-eyes-and...

Hello Matt80 .

I have sjogren s too. I was told by an ophthalmologist to use hyloforte preservative free drops hourly , or as required. I have found preservative free viscotears single use gel very soothing.

I found the changing to preservative free eye drops and gels very soothing too.

Perhaps you could ask to be assessed by an ophthalmologist . My local hospital runs an eye unit with an acute referral scheme. This is to enable people with vision issues ring in and be assessed by expert nurses as to what is the best option for the caller. It means you can get quick expert advice without long delays trying to see your gp.? Perhaps you have something similar in your area too?

Poorly treated dry eyes can cause vision loss ; so it is important you get prompt specialist help?

I found the eye unit very willing to recommend the best eye drops and gels to protect my vision from severe dry eyes. When I was first diagnosed i was very reluctant to use the drops frequently enough . This gave me problems. It is much better to use the drops more often than be too sparing with them? If your eyes are regularly red and painful It would be good to get expert advice for this.

Good vision is so important ! Since getting sjogren s I have visited an optician for content eye pain and have been found to have an eye lash embedded and irritating each eye. Due to dryness they were much more of an irritant? I found that quite surprising and it felt so much better when they were removed. When I wasn't using the drops enough I had a couple of evening with extreme pain and had been unable to see due to lack of moisture. I think you learn to be more careful ? Luckily I caught it before long term damage was done.

I hope you find the support you need too?

Best wishes and good luck.

Hi Matt , my optican advised me to massage my eyes . You can get a eye pad to heat in microwave and an eye massager or use a warm facecloth to massage your eyes , i find this work just as well . Do this at least every morning, hope it helps, best wishes 🌸

Hidden
Hidden

I’m with Weathervane - mybomeam gland disease (MGD - used to be called blepharitis) is one of the 3 kinds of dry eye disease associated with Sjögren’s and this could be making your eyes feel worse and more dry because the glands are inflamed or blocked and are not producing enough oily secretions. Heated eye mask for 15 minutes followed by a gentle massage of your upper and lower lids might really make a difference along with hyloforte drops and an ointment such as VitA POS overnight.

I much prefer Hyabak (sp?) as drops to those prescribed by doctors. They’re available on shell but a bit expensive so maybe see if there’s a way they can be prescribed? Beyond that I second using heat packs on your eyes in the evening to promote oil production and clear blockages. There are also some oil based drops you can use before sleeping but I forget the name. I think they’re prescribed.

The MGD Eyebag is great for warming eyelids, which can then be massaged to express the meibomian glands. These glands can become blocked and therefore cause severe dry eye symptoms. The MGD Eyebag is heatable in the microwave and holds the heat long enough to warm the oils in the glands.

One thing that has been life changing for me is Xiidra - prescription eyedrops (lifitegrast ophthalmic solution 5%). This drop repairs the tearfilm layer of the eye. (Restasis did nothing for me). I’ve been using these drops for over 2 years and now only have to use preservative-free OTC drops 1-2 times daily (mostly right before bed and occasionally once during the night). I’m able to wear contact lenses comfortably again for long periods of time. Some people say that Xiidra stings/irritates eyes (for me this only occurred at the start of use for a brief period and now only happens if my eyes are EXTREMELY irritated (rare) in which case I apply soothing OTC drops prior). Xiidra can also cause a strange taste sensation as well as sinus issues but I’ve learned a method to avoid both of these. After applying one drop to each eye I gently press on the inner corners with the tip of my ring fingers and hold for 90 -120 seconds. This blocks and prevents Xiidra from entering the nasocranial duct. Problem solved.

Xiidra is not inexpensive. I was able to get my insurance to cover (I’m in the US) and also, I’m able to get multiple uses (usually 3-4) out of the “single use vials”.

As an aside - Something I’ve been meaning to look into are Blood Serum Eyedrops. These are made by a compounding pharmacy from your own blood. Sounds very interesting and eliminates side effects that most eyedrops (including Xiidra) can cause.

I definitely think an eye mask that you put into the microwave is the most helpful...at least once a day for 5 minutes. I use Hylo tear (lighter than hylo forte) all through the day because the forte makes my eyes a bit blurry and only help forte a couple of times. Visco gel at night...but again make eyes blurry. My rheumy told me to buy some Actimist spray and use that too over the top.

Good luck...it’s so uncomfortable!

I had the same problem ..did not matter how many times I put eye drops in. My optometrist put in “plugs” in both eyes and it worked! They need to be replaced every 6 months. What a relief!

Matt80
Matt80 in reply to Kopper

Does this hurt ? I don’t like anybody doing things to my eyes

jack101
jack101 in reply to Kopper

I want to try punctual plugs as well. It’s taking a long time to get the referral to see someone. Every day feels like a year!

Thanks for your feedback on the plugs :)

Preservative free eye drops single packs at least 4 times a day. Not sure why but they feel better than with bottles.

I had punctum plugs placed in those little holes on the bottom lid. Took me 3 appts to say yes. They are amazing.

Optho also suggested sleeping with humidified goggles on at night if you have crust in your eyes in the morning given it isn’t caused by allergies. This is a little much for me but to each their own.

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