Hi everyone
I'm lucky enough to have just had a fab holiday doing not very much in the sun but wonder if any of you have noticed the same problems. I always used to tan easily and go a lovely dark colour, but these past few years I struggle to go a couple of shades darker and if I wasn't as careful as I am regarding SPF and time in the sun I'm sure I would burn. After I'd been sitting in the sun for 5 minutes it almost felt like a scald on my body where the sun had been even though there was no redness.
I'm wondering if this is due to the Plaquenil or the SS. I'm a gorgeous colour now, thanks to the fake tan so think it's that and sitting in the shade from now on for me!!!
Also whilst there, we'd been for a short walk when I was hit with the 'if I don't lie down now, I'll drop down' feeling. My poor hubby frantically tried to find a taxi, tried to bribe a waiter on a scooter to run me back all to no avail. He practically had to drag me back to the hotel where I could sleep. Next day when I felt better we both howled with laughter at the escapade - helps to keep a good sense of humour.
Yeah, I've got that sun thing too.
Being a redhead, I never could tan but could certainly enjoy getting out in the sun. Now I start stinging almost immediately and continue to do so for several hours after exposure....deep pathetic sigh....
You made me giggle imaging you and your dear husband "howling"! Nothing like killer fatigue to bring out the best vacation antics in us!
You are wonderful!
Janna
I'm very fair, so like Jana, I have never been able to tan - I go from white to red lobster so I've never known the luxury of getting a nice tan. Both Plaquenil and SjS can cause intolerance of the sun. I know too while on vacation I have to fit in those down times and naps - I'm so glad you and your DH can laugh about it. Clearly you have a very loving husband.
Skylar
I think you will find that a combination of Plaquenil and Sjs will cause sun sensitivity. With any AI disease it is always the best if you avoid to much sun or use a strong sunscreen lotion or cover up.
So glad to hear you had a lovely time. The "lay down, or fall down" fatigue has hit me numerous times when outside. Most of the time all I have to do is call to my hubby and he brings a lawn chair. :D My neighbors are use to seeing me sit in the darnest places all over our property. ::)
They have all found out that the stumbling and staggering neighbor is NOT a drunk. :D Ain't Sjogren's fun? :-\
Have a great day all.
Pooh
Hi Wen :)
I'm with Pooh! It's the SjS AND the Plaq. I too used to go a lovely brown. Now I burn through the windscreen of the car! If I walk in the sun without covering up I suffer later. Not through feeling burnt but I actually get increased aches and pains and a splitting headache.
Take care - Scottie :)
ps - glad you had a fab holiday! :)
Oh yeah, I get the headache too!
I do not take Plaquenil and the Sun drains me now. I used to tan quickly in early spring and stay tan into late fall. Now a 5 min walk leaves me with a red rash from the sun.
Joe,
Forget the sun, you are one of us now! You must roam the earth under the cover of darkness, I don't even go out during a full moon, in fear of a sunburn. Face it, your new colour is a lovely shade of red.
This all started before taking plaquenil, in fact, it happened shortly after being bit by a bat.
Now I get burned with 75 SPF sun screen and my dermatologist wants me to tint the windows on my car.
My next vacation is going to be in the U.K, I never saw the sun or got burned in the U.K.
Nosferatu
a.k.a Epson
Yea, but I have not had blood for a meal since childhood and I seldom have tiger meat.
Since having squamous cell skin cancer last summer removed from my forehead, I stay out of the sun. I burn easily and used to get the tan we all did when we were younger. Now we learn it's not such a good idea. I do have some of the fake spray on tan, though. I like it especially for my legs if I'm wearing capri pants. I'm so white, I'd give Nosferatu a sunburn.
Lucy
My tan come from a can when I feel like adding some color to my pale complexion. Selv tanning products are my blessing that way. I cannot stay inthe sun, I feel horrible sick very soon. I'm probably the palest person around here, but I really don't care. My health is more important to me than being tanned.
And besides that, I'm less wrinkled than most women my age. One day this spring I was at the mall together with a friend from school. In a make up store, the woman working there thought I was my school friends daughter!!! ;D And I'm close to 5 months older than my school friend!!
I do understand peoples desire to have a tan though. I miss those years when I as a child could just run out in the sun, and come back perfectly tanned. I don't miss the sunburn though, with the nights with a burning back bothered me.
Rania :)
I never really tanned, I mostly burned and sometimes if I didn't burn to badly (and after the peeling), I would have a bit of a tan - hard way to get a tan. I now use SPF-50 and I still burn. Oh well, until they make SPF 500, I'll continue to hang out with the Nosferatu and the furry crowds!
Take care -
Patze
the sun is my enemy now,, and it figures the last two days the jobs I have had o do at work have been outside in the sun,, it felt like I was being burned alive all day,,, thought for sure I would pass out anyminute,,
Thanks to all my pale and interesting friends -
You've answered something that's puzzled me for a few years, now I know why my tanning days are long gone!! That said, I've discovered I can get a lovely natural colour using Clinique self tans so no need to bake any more.
Yes I am fortunate enough to have an understanding hubby - it's taken a while though for him to come to terms with my illness, and for me to learn he gets frustrated with the SS and not me. All in all though we cope with it just fine and it definitely helps to be able to laugh and see the funny side of things. We've laughed for two weeks at my migration to the dark side - of the sun parasol that is!!
I'm now going to book my next holiday in a batcave - might be quite fun actually!!!
Thanks again, and love to you all x
I'm wondering if any one else has this reaction; this summer I have tanned nicely, but I get a reaction on my forearms. Itchy little blistery bumps within an hour in the sun. I try not to itch, as it can leave little white scars.
kim
Hi
I too am very sensitive to the sun and yes I burn through the windshield of the car. My Rheumatologist told me that it was due to the Lupus, because I have had sun sensitivity since I was a little girl. Even as young as 3 or 4 years old I would sneeze terribly out in the sun. My mother use to get ticked off at me, because I never wanted to go outside and play when it was bright and sunny. Shoot I would get such awful headaches and downright sick from the sun. Flourescent lighting affects me the same way and this all happened before I ever started taking any Plaquenil or was even diagnosed with Lupus and Sjogrens. I wonder if any of you with Sjs also have problems with flourescent lighting. I am just wondering.
Hugs,
Kathy