Sun Sensitive

[navydad]

When it became apparent that I was sun sensitive (burning sensations),, it was when I sought out answers,, and of course the bug feeling like something was crawling on me,,, but what im getting at is this,, I hear a lot of people complaining about being sun sensitive,, now is it from the meds you take,, the disease,, Lupus, or do you have a undoagnosed neuropathy,, or if you think might be neuropahy,, feet burning,, sun burning the arms,, even through pants you can feel the burning,, again,, do you have that feeling,, and do you think it might be from meds or soemthing else

[bloodless]

The sun often gives me a rash.

I now take meds that cause sun sensitivity, but since I was avoiding it anyway....

[Shani]

Sun makes my symptoms worse and literally makes me sick, also it causes rashes or any other infections/inflammations or migraines usually.
But I have both Sle and Sj?gren, so Lupus is the cause by me.
Aswell with having dry eyes, it really hurts when being exposed to the sun.

[shortstuff]

Hmmmm.  Interesting you mention this....I'm newly diagnosed so not exactly sure of all my SjS symptoms yet.  But 2 weeks ago on vacation we were at the beach and the sand BURNED the heck out of my feet when I walked on it or had my feet surrounded by it.  I noticed later when we were back at our hotel my feet still killed me.  I guess this is what you're talking about as well?  My eyes have been a mess in the sun for about 2 years, I definitely can't go outside without shades.  One time I forgot them and had to drive 60 miles and that was a near disaster.

[Scottietottie]

Hi 

I think it's a combination of things. I became averse to the sun several years before I got dxd. It was before I burnt but it was like something inside me told me not to spend much time in it. In a former life I would sunbathe for hours.

I'm pretty sure the sensitivity happened before the meds and then they probably added to it.

Nocturnal suits me!

Take care - Scottie 

[Pegasus47]

Navy Dad:

I don't take meds except for Prednisone once a while.  I am sun sensitive- just like you described.  From the Sun, I will develop mouth ulcers and skin lesions.  Both ulcers and lesions are suceptible to steriod cream- hycrocortisone cream.  These ulcers and lesions are not viral induced- did many tests.  They can be conqurered by hydorcortisone cream.

I think it is from the disorder- I use to worship the sun every  summer and go hiking for hours without any problem. 

Pegasus

[grandma7]

I am experiencing sores that won't heal on my arms only and mostly due to the sun.  I'm on plaquenil and my hair is turning yellow.  I don't look good in yellow so that is not good.
the plaquenil is helping me feel better, so i'm dealing with the side effects.
i had melanoma so i'm not in the sun at all anyway.  but during the extreme heat this summer, all i had to do was walk to the front of the house to get the mail and my arms would burn and then a sore/blister would appear. 

[malditogrillo]

When I go into the sun, I have a reaction....photo contact dermatitis...my skin burns and I get the itchiest rash on earth.
Within a day or two, I'll start feeling run down and like I'm coming down with something.  Then, I'll get hit with the joint and muscle pains, my eyes get really dry, and I just feel miserable.

And it generally only takes a little bit of sunlight to trigger this...about five minutes or so.

This has been happening since 01 for me.

[cport]

I was talking to my Rheumatologist about this very thing only the other week when i was diagnosed as being sun sensitive.
The Hydroxychloraquine (plaquinil) can cause sun sensitivity but also so can the disease. I don't take plaquinil as it caused me to have serious headaches so i know mine's not down to that.
When i go out in the sun i burn badly even with factor 50 on. I also have little sores on my scalp that weep and itch from going out even if i'm not in bright sun light. The bright lights at my work place cause the same effect and causes migraines to. The Rheumy said though that if i start methotrexate then that will help with the symptoms of photosensitivity. Got to see a dermatologist to x

[slang]

I went to the doctor for rosacea. It was my research for this is how I finally figured out that I Sjogren's. My doctor then confirmed what I had thought. I didn't realize all the symptoms I had were all related! So I wonder if the sun sensitivity is part of Sjogren's too? I am on medication for the rosacea now which makes me sun sensitive anyway.

[Prairie Gal]

My rheumy told me at the second visit, when SjS Dx was confirmed, to stay out of the sun.  Seems we, like Lupus patients, are sensitive to it.   I found out months later that Plaquenil makes some of us more sun-sensitive, too.   I had several terrible sunburns as a kid and have always avoided sunbathing.  I put sunblock on my face, hands, and arms every day now.

Prairie gal

[cmclien]

I've never seen it listed in conjunction with SJS but as others have pointed out to me, alot of people have AI symptoms that perhaps cross between SJS and SLE.    I have no issues with the sun.  I'm very fair skinned so have to be careful to not sunburn but it doesn't give me rashes or anything like that unless I'm on a medication that makes me sun sensitive.