Hello, I have lupus and I’ve been on methotrexate for 18months pus hydroxy and folic acid. My eyes have recently become more susceptible to outside uv light (even on dull days). I wear uv sunglasses etc plus dry eyes eye drops but to no avail.
Any experience of this and any advice? Thank you!
Have you seen your optician or ophthalmologist if you have one? I have the same problem with UV, transition lenses, had plugs put in a few years ago, use a heated eye mask 15 minutes a day and then massage my lids to release oil from mybomean glands.
Due to Sjogrens my eyes are still very dry and UV sensitive so I struggle- but using Hyloforte drops, Artelac gel and transition lenses is the best I can manage. I think I have worse problem in winter due to the addition of the cold wind.
Presently it’s humid here in Scotland and this doesn’t suit the rest of me but my eyes love it! Someone told me that blinking 15 times in succession really helps them so this could be worth a try too. Sorry not to be able to advise more but certainly most people I have met with Sjögren’s live in shades for the reasons you describe😎😎
The heated eye mask really works?
Well I’m sure you know all this far better than I do, being a scientist and understanding the relevance of blinking and tears to our autonomic nervous system - or is it or vice versa?
So this is my own understanding from what I’ve learnt from one optician with PhD and also from one of the few UK Sjögren’s focussed rheumatologists.
The thing about (both primary and secondary) Sjögren’s is that there are usually three types of dry eye disease co-existing. One of these is lack of tear production - tears forming the outer layer of several layers protecting the surface of our eyes.
Punctal plugs are sometimes used to block the ducts where they drain away in order to conserve the fewer drops we produce. And for this outer layer of tears of course there are artificial tear drops, which really must be preservative free. The type of drop that helps a person most is very much a personal thing - including types of dispensers and how we react to constituent ingredients. Hyloforte and a gel called Artelac are my current favourites.
Then there is the protective layer of mucin which helps protect the eye surface, corneas etc and prevent corneal erosion. In Sjögren’s this layer of mucin is usually much thinner and more viscose than it needs to be in order for a our eyes to function properly. It causes strings of mucin to form floaters. Again the drops and gels are designed to make this thin overly viscose layer less of a problem.
The third dry eye disease of Sjögren’s is meibomian gland dysfunction (MGD) - which used to be called Blepharitis. With MGD the glands get blocked up and swollen and don’t produce the oil required to keep tear ducts etc lubricated and working well. It is because of MGD that we are encouraged to use heat and massage to open up the glands and help restore or improve oil production.
I think all three types of eye disease are the reason we are so often photosensitive and need to wear shades. And usually drops alone aren’t enough to relieve severe dry eye and so, yes, heated eye masks and massaging eyelids is an important part of a Sjogi person’s daily routine and if I don’t do it then I’ll know about it later.
There - end of my probably very unscientific interpretation of how all this miserable sicca syndrome works and things that can help a little. 🤷🏼♀️😎
Thanks! Very interesting. I commented earlier that wrap around sunglasses and a shady hat as well as all the levels of eye drops helps. I also clean and gently massage my eyes with a warm face washer each morning after the overnight's application of eye ointment. Living with Schogrens is so great isn't it!
Yep a romp in the park! And this is just the eyes! 🙄😎
Thank you for your advice. I’ve dry eye drop recommended by my optician but they don’t seem to help. I have a long awaited!) appt with my rheumatologist in a week so will mention the change in sensitivity in case she can shed any light on it (no pun intended!) Cx
Yep that’s me. Also my vision has recently become markedly worse. At first I thought it was allergy season and it’s also 100 degrees here but nope. I’m playing Lupus Roulette. I’m sorry you’re dealing with this as well. 💛
I forgot to add that certain medications used for pain and low mood can make sicca and UV sensitivity much worse eg Amitriptyline, Cymbalta and other nerve gating agents as well as antihistamines.
I've noticed if I'm out too much in the sun, my eyes burn as if sunburned....on top of everything else...
I'm very photosensitve and have to be completely covered up and have found that work safety glasses, which are very wrap around are the best. they protect from UV and you can have clear or tinted - I use clear mainly because with the rest of my face covered I just look like a bandit beetle. But recently found some with a slight tint that also protect against blue light. Bolle are the best I've found. I also have an umbrella!
the ones that also protect against blue light are Bolle Cobra COBESP Platinum
Follow up on above. Saw my rheumatologist today. Due to uv issues she’s referring me to eye hospital for full check up due to my long term hydroxy use. I use Hyabak eye drops which she said were fine for dry eyes (as they don’t have preservatives in which can sometimes mess with meds). I also take over the counter Macushield tablets but not sure if they have preservatives in (Boots opticians didn’t know either)
Bamboo UV Protective Clothing 
Anywhere in UK that does full UV window tinting?
UV. Some information.
June's Topic of the Month - Light Sensitivity
A guide to light sensitivity for people with lupus
