Burning within minutes.

[Cindy]

I need helpful tips. Not driving is not an option. I get burn very easy like today, just like 4-5 minures of driving, the sun was hitting me right on my left side my ear is completly burned and the temperature is 50. Imagine when it gets to 100. I live in Texas. Not going to lie I feel sad and angry. My ear still hurts and is 4-5 hours after. What tips do you have? This is all new to me since last year I had some but not to this point.

[karleesgranny]

My dermatologist told me to wear 75 (or better) spf sunscreen everyday.... Because even some lighting can cause skin burning and other problems... I have terrible sun spots on my forearms chest and face... And i burn very easy...i didn't use to be like this...

[jazzlover]

I have to drive to Texas twice a year... (my HOME!)... and I had to get our car windows darkened. They are "illegally dark." But .. I got a sticker so that it is NOT illegal. Your doctor can write a prescription that you need darkened windows and then you take that to the Highway Patrol for a special sticker.

It helps. The only thing it can't really fix is the windshield.

What meds are you taking that make you sun sensitive?? Any??

[Cindy]

Plaquenil!! But I noticed that my skin was getting sensitive to the sun before I started plaquenil is just that now is out of control. I started on plaquenil last July. Is hard to accept that at 29 the sun is now my biggest enemy.

[Joe S.]

I use SPF30 clothing and floppy hats. I get the clothing at the sporting goods store.

[quietdynamics]

Here are types of auto window tints SPFup to 1000 ...some are clear. You can look at the reviews.
I did see somewhere that sometimes med insurance will pay for the film.
http://solutions.3m.com/wps/portal/3M/en_US/Window_Film/Solutions/Markets-Products/Automotive/

There are others available.

[Cindy]

Thank you all. Im desperate summer is coming and Im afraid Im going to be stuck at home . quietdynamucs great website I will show it to my husband ASAP

[Sooki]

My rheumy prescribed cellcept when I developed sun sensitivity.  I take 2 pills (500 mg each) per day in addition to the plaquenil I was already taking.  He had determined that the sensitivity was not due to the plaquenil (which he said gives a distinctive reaction).  I also had a skin biopsy of the rash to see that it was a lupus-type reaction.

The cellcept helps a lot with the sun sensitivity.  I still have to stay out of the sun (hat, gloves, longsleeves, etc.) but it helps.  It also helps a lot with dryness and joint pain.  I don't have any side effects from the low dose I'm taking, but others might.  I've taken it for two years now. 

[dainbramage]

You are more sensitive due to the drugs you are on.  My Vit D is low and I live in Florida. But all the drugs I am on, I can't sit outside or I burn.

[quietdynamics]

Derma Info from Dr. Fox re: Sun...recommends  One commonly available sun block is Neutrogena
Sensitive Skin Sun Block SPF-30

"We always suggest constant daily sun protection for patients with autoimmune condi
-
tions. Because the wavelength of light causing sun sensitivity in autoimmune conditions
may not be in the UVB spectrum (290–320 nm), patients should use a broad spectrum
sunscreen. SPF factors refer to UVB protection only, so patients cannot count on simply
the SPF factor. Most sunscreens available now have added UVA protection (290–320 nm),
commonly from chemical UVA absorbing compounds, such as Parsol, 1789 (avobenzone).
However, we prefer physical sun blocks, since wavelengths outside of both UVB and UVA
may affect the patient with autoimmune disease. Physical sunblocks contain titanium di
-
oxide or zinc oxide, which reflect rays. One commonly available sun block is Neutrogena
Sensitive Skin Sun Block SPF-30, which uses purely titanium dioxide as its active ingre
-
dient. The most effective protection is sun protective clothing, since it will not wear off as
sunscreens do. Obviously, avoiding excess sun contact altogether is prudent, such as trying
to stay indoors during the intense sunlight hours of 10 AM to 2–4 PM"
http://www.robertfoxmd.com/SjogrensByFox/Dermatologic_Manifestations.pdf

[LisaMarie]

Sounds like the temperature has nothing to do with this.  It is the light.  So you would only see a change if you have more sun during the summer than now.  So, I would look into things like wearing a floppy hat   Sunscreen.  Tinted windows.

[Skylar]

I've been diagnosed with Polymorphous light eruption which is an immune reaction to a compound in the skin which is altered by exposure to ultraviolet light (UVA and/or UVB). I wear UV blocking clothing (long sleeves/pants) and floppy hats - even gloves if I'm going to be out for extended time in the summer. I was taking Imuran (Azathioprine) and I think it did help. I've seen several dermatologists and all of them said it was not related to the Plaquenil. Frankly I find the clothing to be the most effective, more effective than sun block which I also wear.

I mention this because you might want to see a dermatologist and see if you have this too.

Because I have to avoid sunlight, I take Vit D (either D2 or D3) - dry, not oil based and I get blood work to monitor my levels. If you're having trouble with and avoiding sunlight you should get your Vit. D checked too.

[slccom]

Here are types of auto window tints SPFup to 1000 ...some are clear. You can look at the reviews.
I did see somewhere that sometimes med insurance will pay for the film.
http://solutions.3m.com/wps/portal/3M/en_US/Window_Film/Solutions/Markets-Products/Automotive/

There are others available.

Even if medical insurance won't pay for it, you can deduct it on your taxes next year. Just get a prescription.
Sharon

[Bucky]

Cindy - I've gotten burned through the car glass too (and my car does have a light tint on it).  This is only early spring, just think what it will be like in the middle of summer when the temperatures are hotter.   

I am fair skinned and have always burned easily.  Now, having Sjogren's, I get burned THROUGH my clothes - which is so strange to me. 

Our son plays high school tennis.  Today, (well, actually yesterday since it is now the wee morning hours of Saturday morning) there was a tennis match and I went to watch it.  I was sitting there wearing my floppy hat (and feeling very self conscious as nobody else was wearing a hat - except the guys who were wearing ball caps). The match started at 3:30 p.m. and within a half hour I got the itching / burning feeling in my legs.  I got this same reaction last year at a tennis match.  It's from the sun.  Now, thanks to Sjogren's, I am very sensitive to the sun.

I stayed for several hours at the match and then left.  When I got home, I looked and there were red welps on my legs.  Six hours later it was fading, but you could still see some.

I'm going to have to look into the sun protective clothing.  It's disheartening to me to be the "old lady" sitting there out in the sun and all covered up.     At these tennis matches there is no shade to get under - you're out in the full sun.  I have sat there with my umbrella before.  It is, what it is, and you have to do whatever it is you have to do to protect yourself from the sun.

Bucky

[SjoGirl]

Cindy,

The hardest thing I've found with this disease is all the losses we live with  . Like others I became even more sun sensitive since this started (though I always was) in fact, I think that is how my flares began. I was walking outdoors a lot in the sun with no or little sunscreen. I started getting rashes, ulcers in my mouth, swelling and pain in feet, etc.

Long journey now, but I was dxed a year ago and finally started hydroxychloroquine this year. I spent last summer indoors almost all the time due to heat and light sensitivity though found out I had an infection and believe that contributed to the heat sensitivity as it was not as bad after the infection was eradicated. All this dimished my marriage as my husband and I used to love to walk together.

Meds will make you more sun sensitive as well as AIs in general. You've gotten good advice from folks about your car and clothing.

On a deeper level, even though you are suffering losses I gently suggest trying think about what we still have. I'm trying to see this as a wake up call to enjoy what I can of life, not Pollyanna count your blessings, but I do count my blessings and think a lot more about what I want to do and can do and I do those things because I don't know if I'll be able to in the future.

Also, about every time I feel really sorry for myself I meet someone in more difficult straights. Last night is an example I'm on an elevator in the hotel I'm in when a man gets on with a lot of bags from a drug store. I said you walked a long way with those (he was older) and he said oh no I didn't walk, I had heart issues and had a transplant which did not go well and have a lot of complications. He had bags full of compression stockings due to blood clots in his legs. I got of the elevator praying for him and telling myself to enjoy each minute that I can. Counseling helped me get to this place.