Photophobia?: Hi all, does anyone... - Hughes Syndrome -...

Hughes Syndrome - APS Support
9,467 members9,534 posts



Hi all, does anyone suffer from sensitivity to light ? I've had to change all my lightbulbs and uplighters so i don't have to look at the lights. I bought a £40 light display last christmas (LED lights) )and i've given them away. This has only started over the last 2 years. I have sun sensitivity in summer but i did'nt think this would affect me in the house. Thanks Elfie

17 Replies
HiddenThis reply has been deleted
in reply to Hidden

Hi Apsnotfab. Yes I have I now have a diagnosis of undifferentiated connective tissue disease as well as APS. When I was in hospital it was very uncomfortable as you can imagine with all those horrendous fluorescent lights . Do you think I need to see an ophthalmologist because of the hydroxychloroquine ?I wondered whether this is part of APS.because when I have a migraine I can't tolerate any light at all .ps. I had my eyes tested recently and everything was fine . Thanks Elfie

Yep , especially head lights and even the TV

Yes thanks for your answers ,I wear glasses with reactive lenses but they only change in the sunlight . All the best Elfie.

Yes I do. Optician was surprised how sensitive I was today. I hate night time driving due to headlights.


Yes I have a problem with lights too, I even have to wear sunglasses driving just for normal daylight not even when it's sunny. When I sleep I wear a black eye mask because even the tiniest bit of light gives me a headache even when my eyes are shut! Very strange!

I just want to shut my eyes when the lights are on. Nobody has ever said why I get this, they only say about being light sensitive causing a flare but this isn't what I get.

I use to see !! my eye Dc. twice a year as that was what was called for . now it has been dropped to once a year and that is due to the Hydroxy--400ml per/day

Yes I struggle terribly with lights. I can't drive in the dark at all and am constantly sensitive to flickering lights and any type of glare. Images of light stay in my vision for ages too drives me nuts!

in reply to Tinythepanda

I wonder if you stay high enough in INR? Also as you selftest (I do not know if you are Lupus Anticoagulant), have you doubletested with the lab in the vein a couple of times. For me I get a higher (0,6 - 0,8 in INR) reading than in the vein. The vein-result is the one that counts.

Best wishes from Kerstin in Stockholm

in reply to Lure2

What I wanted to say was, that after anticoagulation, my photophobia has improved almost totally. I have today an INR between 3.5 - 4.0 and stay stable with selftesting.

since my stroke last year I'm sensitive to light my I pad is nearly dark (not to me) tv, lighting in supermarkets etc bother me. My spectacles now change to dark lenses when out which does help

Hi everyone thanks for your replies . Yes i've put my ipad on nighttime its much better,still cant use it a lot though. I don'nt know if Kerstin was replying to me, but i'm on Tinzaparin injections .Maybe i need a higher dose . Thanks again everyone all the best Elfie

in reply to Elfie1

Sorry, it was meant for Tinythepanda. BUT it did help with a proper anticoagulation. For me anticoagulating on a steday level has helped enormously. That is why I am alsways nagging about it as I want to tell others to feel better.


Hi Kerstin,

My INR is 3-4 and I'm in range. I've had issues with lights etc for 4 years when all my symptoms began. I had a venous test done when I initially started self testing and it gets checked at each Rheumy appt every 6 months. In my case i don't believe it is linked to INR as I experience it whether my Inr is in range or not.

Yes elfie I too am so sensitive to lights! My eye doc said I must wear sunglasses at all daylight hours! I'm not sure why I am, but don't know if I've ever been tested for Lupus!? If I don't wear sunglasses, even in house when glare comes in I can't see at all! The glare stops me from seeing?

in reply to Debbweb01

Thanks for replying yes it's a bit of a pain it's almost impossible to avoid because nearly all lights and lamps are LED. All the best Elfie

You may also like...