I have a question.....I've heard that photo-sensitivity is part of SS. Additionally, I started on Plaquenil a few weeks ago and it mentions an increased sensitivity as well. What does that mean?
I've always had to be careful about sunblock as I do burn. Is that what that means? Just easier to burn or is there more to come? With summer on the way and a new med in my system, I'd like to know what I am looking out for and maybe have some ways to safeguard against it.
I take plaquenil for lupus. Did you get your eyes checked? I wear sunblock, long sleeves, and a hat when i go out. I try and only go out early of a mornig or late of an evening as i get the butterfly rashes. Florcent lights also bother me the fatigue gets worst and i get a headache. I just got home from the doctor and ill try and look up the links i had and post them in a while.
I only have primary Sjogren's but there is already enough involvement that he felt it necessary to treat with the Plaquenil. I see my eye doc every 6 months as normal routine...not due to go back till Sept though.
Florescent lights too? wow....funny but I feel tired and fuzz-brained after being in meetings etc with that kind of lighting. I always assumed it was the meeting being mind-numbing itself. LOL. I am curious as to how sun may affect the skin or joint pain, etc. I appreciate you looking for links too. The more info the better.
My rheumy put me on Plaquenil...and that lasted about 6 months....as I could no longer go outside without developing horrendous itchy prickly rashes all over...even if i wore sunscreen, long sleeves, long pants, gloves and a huge brimmed hat.....so I stopped the Plaquenil...it required about 6 months for it to clear....I now go out with sunscreen, and long sleeves most of the time in the middle of the day....no more rashes...what a relief........About that time i added Vit D3 2000u every morning with my supplements and, knock on wood, the Cryoglobulinemia vasculitis has not bothered me either....and I've managed to avoid doctors for the last year......this is after 30 plus years of SS....Also about that time I finally retired....so maybe the lack of stress and working under flouorescent lights has had a beneficial effect. Who knows...but there is light at the end of the tunnel....or maybe just another break in the middle....
Thank you!!! They haven't told me anything other than it can happen. Not even sure what "it" is. LOL….and its always the way that you are trying to absorb stuff in the doc office and forget to ask the simple questions.
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.
I get that scarlet with spiderweb-like bit too!! That's what that is? LOL…..This is so sad. I feel like I say that on a daily basis since getting an actual diagnosis.
I started keeping sunglasses with me al the time a few years ago as I really don't tolerate bright sunlight well anymore. And I sure can't sit in the sun at all when at outdoor restaurants, etc. Its just uncomfortable on my skin.
All good to know as the Doc said the meds can make it worse. Thank you for replying!
Dont be sad - think about it this way. By avoiding sunlight and taking good care of our skin we have beautiful soft complexions and less solar damage. I'm all for that!
I'm a Primary SS, thus far. I'm on pilocarpine and the only increased sensitivity I've noticed is to sunlight and bright lights. I haven't been without sunglasses since I was a teenager (you know, like 4 or 5 years ago LOL). First they were to hide my squinting in the sun while still looking cool, but then I began to notice they became a necessity as I got older. I now have transitions lenses and even those aren't quite enough, so I drive with the sun visor down and plan to get clip-ons as well. Night driving really bothers me especially with the cars that have those blue headlights that are so bright I swear they sear your retinas to the back of your brain. I've been fortunate that I've not had any skin issues with the sun (knock on wood) so far.
I have SS and Photo-sensitivity is definitely a problem for me. Besides that I have blonde hair, blue eyes and very light skin. I have never had a tan in my life! Damn that German heritage:) But I have some ways around it. It gets very warm and humid in southeastern WI but I want to spend time outside. I wear 3/4 or long sleeved coton blouses with SPF 100 underneath (Neurtogena makes a good one). I also put that sunblock on my face then SPF 30 tinted-moisturizer. I reapply these as needed. If I can find shade I use it, but sometimes that's just not possible. I also take my walks in early morning or evening.
Like many others, I take a D3 supplement. And ALWAYS wear sunglasses. I keep pairs stashed in all cars I tend to ride in or drive.
I do also have a problem with flourescent lights. If it gets bad while shopping, I put sunglasses on. Vanity has left me. :)
As others have mentioned, it is very important to see an eye doc while taking Plaquenil.
I really hope my suggestions helped. Keep me posted on your progress.
Lovely...LOL. I know exactly what you mean about those blue headlights.
Bels, thank you for the suggestions. My coloring is odd in that I have nearly black hair but skin is on the fair side and I have green eyes. I burn like there's no tomorrow if I'm not careful.
Thanks to everyone who commented. The things you all described explain an awful lot for me, including stuff I didn't think of as related to this. As mentioned.....vanity has left and self preservation is now most important! I'm all for it.
I take Plaquenil for SS but only for the last 3 years. For the last 10 years I have had horrible sun reactions, first itchy then if I am in the sun for more than a few minutes I break out in big horrible blisters on my arms and legs and head, really nasty. The sun is not my friend!
I am the same as Lovey, i have primary Sjogren's not on any meds as i react to Planqunil, except for pain i get photo sensitive in light, my eyes really start hurting, driving at night is also hard, so i try not to drive then. My sun visor is constantly down, in fact I've been like that before i was diagnosed with Sjogren's so perhaps i've had it longer than thought
Lovey said:
I'm a Primary SS, thus far. I'm on pilocarpine and the only increased sensitivity I've noticed is to sunlight and bright lights. I haven't been without sunglasses since I was a teenager (you know, like 4 or 5 years ago LOL). First they were to hide my squinting in the sun while still looking cool, but then I began to notice they became a necessity as I got older. I now have transitions lenses and even those aren't quite enough, so I drive with the sun visor down and plan to get clip-ons as well. Night driving really bothers me especially with the cars that have those blue headlights that are so bright I swear they sear your retinas to the back of your brain. I've been fortunate that I've not had any skin issues with the sun (knock on wood) so far.
Just a side note to the conversation about the sun sensitivity from taking Plaquenil. First, my EX-Rheumy told me that there is no correlation between Plaquenil and photo sensitivity. Hence why she is no longer my Rheumy! Secondly, I used vinegar on my skin when it first happened to me. It drew out the heat from the burn that I had acquired. I used the vinegar a few times, and then moisturize moisturize moisturize! It is what has worked for me when I slip up and find myself in the sun without sufficient protection. Just thought I would share!
Hey that's really cool. I had heard that about witch hazel, which I've recently stocked in the house just in case. Is it regular vinegar or apple cider vinegar? (being the cure-all that it is. LOL) Thanks for sharing!!
So SS can cause the eye problems with sun sensitivity and night driving? I knew the possible problems from Plaquenil and dryness but didn’t have a clue about the other. Thanks for sharing another piece of the puzzle.
EnjoyLife, I have just used regular Vinegar. People freak about the smell, but your skin pretty much absorbs it. I have also put it in my bath water before when I have had a sunburn on my back or the back of my legs. If you ever have any ideas let me know!
TL….be careful with Plaquenil. I have other eye issues so between that and the SS, I see my eye doc every 6 months religiously. The rheumy asked me 3 times if I am going to continue seeing the eye doc that regularly because the Plaquenil can cause issues. He says that if they are caught early, they are correctable and won't cause long-term damage but can be a problem if not monitored. Something to keep in mind.
Kayrn…you got it. I hope I can be useful at some point. LOL…..I've gotten so many great hints here.
