Ouch, that sounds painful! I do get the dryness, burning and itching and some redness. I thought it was rosacea, and I need to go and get my skin checked. I haven't done that in a while, and my last incident was an unpleasant one. Long boring story. I am fair with green eyes, at least my skin on my face is fair. I can actually get fairly dark if I am outside for long on my arms and legs and it lasts most of the winter. We have not figured that one out, yet. I use vanicream products since they are the few products that don't make me break out in a rash. I can't stand to wear a hat anymore with the headaches, so I don't spend a lot of time outside. It is hard to find a sunscreen I can tolerate. I can handle the Vanicream for a day, but not everyday. I really DO learn a lot here. Tog said:
Hi EJ
Photosensitivity, like a lot of SS symptoms can vary widely from individual to individual. At it's best it will appear like mild sunburn or a fine reticulated rash and feel sore and dry for a few days, it may also affect your eyes in that you are particularly uncomfortable in bright light.
More severe photosensitivity - I get a scarlet rash with a very fine spiderweb like lines running through it, even after just a few minutes in bright sunlight and usually very small 'bullae' lesions which are pinhead sized blister type lumps. It's very painful like scalding burns and almost nothing will soothe it down. Interestingly I don't seem to peel afterwards, but my skin is extremely dry and can flake. The worst areas for me are on my scalp face and chest - obviously these are the most delicate areas of skin, arms and legs are a little tougher. And with photophobia to even bright artificial light, being outside on a bright summer day is a huge challenge. Even with dark sunglasses, hat, sunscreen, long sleeves and under shade.
Hey….well, my sister-in-law wanted to go down to the pool today so I went. We were only there a total of 2 hours. Tons of sunblock, dipped in the cool water a couple times and moved off into the shade at times too. When I got home I was so exhausted I could hardly move. it was scary…and as the night goes on the joint pain is getting worse and worse. I haven't been flared up like this in awhile. I'm not sunburned but I feel horrible. I am assuming its related and I basically tempted fate but wow…..
Just whining. LOL….and reminding others to take the sun seriously now that summer is in full swing.
Hi EnjoyLife, so sorry to hear you are having a flare up. Your post got me wondering, because those are the symptoms I get after sun exposure and I am not on Planquenil, so it led me to consider if there was a relationship with joint pain and feeling ill due to UV exposure and SS directly. In the past my doctors just wouldn't believe me that I felt so unwell after sun exposure and they put it down to some kind of phototoxicity (drug UV interaction).
Anyhow - I stumbled across some information, and although it is by Lupus researchers specifically - please keep that in mind, it does hint to me that there is an interaction in autoimmune conditions and UV exposure that produces a systemic response - and the reason. for joint pain, headaches and feeling so sick.
If anyone has any SS specific information on photosensitivity and systemic symptoms, I'd really like to read it....could they post it here please?
I suspect it's still a relatively unknown and unstudied aspect of SS yet to be fully described and understood.
"......Flare-ups from the sun are reported to be associated with SSA antibodies. Personally, I have seen sun as a trigger of systemic symptoms mostly in Lupus. However, I spent some time on Sjs patient sites, and found alot of references to systemic flares from the sun..... (edited)......
....Sun sensitivity does not require a rash. The theory is that UV light increases the breakdown of cells in the skin, which release more intracelullar molecules-like DNA and Ro/La ribonuclear proteins-thus providing more "antigens" for autoimmune antibodies to react to and thus trigger systemic symptoms.
I know I am sun sensitive, even w/o being on Plaquenil. My symptoms are headache, flu-like, face burns, eyes hurt, and I am very tired. Sometimes I am dizzy. I believe it is one of the reasons my first doctor believed I have a "lupus component" to my SS/MCTD. However, the SS is the only thing I have for sure blood positives for, but, then again, look how long that took to show up? If I put my life on hold to wait for things to become decisive..... Anyway, I know to stay out of the sun.
Thanks everyone….the joint pain is horrible today and I have little blister like things that are popping up on my hands, etc. They hurt. I've never been this bad from the sun before. So not a happy camper. wwaahhh. LOL
Totally doing whatever I can. Hoping I didn't throw myself into a full blown flair-up. Well, at least I'll never tempt fate like that again. LOL.
On the good side, it makes me hopeful in that I'm not used to feeling like this so much. Seems like the Plaquenil and the supplements are really helping.