Thanks for the info bunny. Im sure it can prevent someone else from having the same experience. I wouldnt have thought twice about doing the same thing, either. Hope they get better soon.
Melissa

Excellent point. BTW, many SLE patients are a sensitive to light that is able to pass through GLASS, i.e., the windshield, so be sure to wear sunscreen when in the car!

Tracy

I've noticed my eyes being extremely sensitive to the sun and/or light with this flare as well. Now I wear sunglasses quite frequently!

proudwyo...if you are on plaquenil that is most likely causing your eyes light sensitivity. that is one of the effects of this drug. Just an FYI.

Thanks Melissa. I do take plaquenil. A small price to pay if it ends up helping though. :-)

Oh I have the same problem with my eyes and the sun and light, but I had it even before starting the plaquenil... Some days I even have to wear sunglasses indoors because my eyes hurt so bad from all the lights! Has anyone experienced this? I also have extremely dry eyes, nose and mouth also before starting plaquenil....

I have been extremely light sensitive for years. I am required to wear dark sunglasses outdoors because of past retina problems, but I wear tinted glasses indoors to read and use computers. I've had to deal with comments about that for years in offices when I could work, but there's no way I could tolerate fluorescent office lights without tinted glasses.

And at home I am in the dark. I never turn on lights except in the kitchen.

Right now I'm afraid for my right retina again. I am having symptoms, but since I lost my insurance, I hesitate to sound an alarm. There's nothing more important than an eye, of course, but I've never been in this moneyless position before . . . . . .it's a new experience.

Sorry to ramble, but to answer the question, yes, yes, I am extremely photosensitive.

And I live in the Sunshine State, which doesn't help. Sometimes I think I need sunscreen on indoors in the dark, LOL. Just kidding! Don't anyone jump on me, please!

Wolfgang,
I don't think anyone would "jump on you" for wearing sunscreen inside or outside.
Whatever works for someone is what they need to do.
Blessings..........

Wolfgang that sounds like a good idea, tinted glasses. I want those eye glasses that tint depending on how much light there is, so it autimatically adjusts. I don't know if it would be as photosensitive as we are though.
Bunny glad you made it through your 8 hr trip, although with sores. I don't have my windows tinted but now I really want to get it done. To think as much as we are in the car, it would be worth it to block all the heat. It is 100 degrees and hot in TX.

I am so photosensitive I cannot drive in a car that does not have very dark tinted glass without getting headaches, fever and feeling ill. I am in the sunshine state too and it has been a brutal summer. I went out today for the first time in about a month and ended up with 100.1 fever. I think I will go back to hibernating lol. Even minimal sun exposure and I get ill with a fever. And the heat alone makes me sick. I seem to get more and more light sensitive each year too. For the past 6 months, the light causes me to get the normal spots you get when looking into the sun but it happens just from normal outdoor light and lasts for a lot longer.

Therese, the dry eyes / mouth sounds like Sjogrens which I just got diasgnosed with. I have very blurry vision which my rheummy & opthamologist said is due to dry eyes.

I was tested for sjgrens when I was diagnosed with lupus and it was negative.

Yeah I have to wear tinted sunglasses in the house and sunglasses over them when outside. I cannot take the heat or the sun as it makes me sick. My eyes are always blurry from sojrens or lupus eyes who know hat. Cannot read now. hugs marilyn

The sjs was negative for me as well but the blot test taken by my eye doc showed very little moisture and said they were almost sure I had it. Sometimes its a hit and miss with the testing. I am now starting to get the dry mouth a little. I can stand the sun as long as there's no heat. Going outside my house is like a blowdryer in the mid day, so I enjoy outdoor activities after 7 pm. Shadeseeker, only about 3 more months and cool weather. Mabye then you and the little ones can have more freedom.

Good post. I have the darkest legal tint on my car. Keep the windows shut whilst driving and wear very dark glasses. Some people wear driving gloves, so that's another thing that can help. I keep sunglasses all over the place, so I never get caught without them (hats and gloves too). Ah well, you can never have too many accessories!

I too Sjorgrens which causes dry mouth and dry eyes. For my eyes, I finally gave up and started restasis about 6 months ago. They say it takes up to 9 months to show any effect and I'm hoping in three months I'll actually have tears! I also use sterile lubricant eye drop which help a bit. I also take salagen which is supposed to be good for symptoms of sjogrens but I'm not sure it really works. For my mouth I suck candy constantly and use biotine products but again, I'm I'm still pretty dry. It's pretty uncomfortable!

As far as the lights, flourescents kill me. I won't have it on in the house and the stores are a killer. It makes me feel so uncomfortable.

So I'm just adding my 2 cents and letting everyone know, which I know they know already (yikes, what a bad sentence!) that they're not alone!

Take care you all.

Dale