Sun and Sjs

[Sandra]

I would desperatley like the truth about the affects of sun and sjs. I have auto immune problems. I was diagnosed with sjs in May 2006 but know I suffered for years before the diagnosis. Lupus was also a suspect. But after the sjs diagnosis my rheumy reluctalntly ruled out the lupus idea. I suffer terrible after being int he sun. I asked my rheymy about sjs and the sun and she denied that sjs had sun issues. My problem is that if i listen to that like on the weekend finally a sunny one I had been feeling pretty good so I went bikeriding, swimming and did some gardening a sn riding in the car. Well I get up yesterday Monday and what a mess again! Red red face, burning skin, and my joints and muscles so sore that I could hardly move, and I just want to sleep or lay around. So what is going on? I'm confused and afraid to move, I feel like prisoner in my house and am feeling like a fool because i was told that the sun is not an issue? Help. Sandra

[Linda196]

Sandra, sun is an issue, but it's not well documented. Unfortunately most resources say something like "light sensitivity" or "protection for the eyes is required  from the wind and sun", that makes it seem like the only reaction is squinting or increased dryness.

Many people with autoimmune diseases (other than Lupus) react poorly to the sun because once again the body's immune system has mistaken something for something else, and mounted an attack on it. In addition, some of the medications used to treat SjS can cause sun issues too. Granted not everyone will have these problems, just because they are possible doesn't mean they are guaranteed.

[genko_b]

Your pharmacist can tell you about the sun and meds, just ask. Both my plaquenil and cellcept bottles have "stay out of sun" labels on them. My response to sun is definitely worse on these meds, but I still had a mild reaction when out in the sun before I started taking them.

Genko

[downrabbithole]

Personally, I just have skin effects and my eyes are very sensitive to the sun (I always have to wear sunglasses or it literally hurts). Other than that, I seem to be okay...

[irish]

Sandra, The doctors probably don't even realize (like they should) that any autoimmune disease can cause sun issues. The medications are to be considered also.

I suffer so much from the sun and terribly from the heat. When I go out in the sun I wear heavy sun block, sun glasses, a cap to protect my eyes and face some from the rays. I have a man/s cotton long sleeved shirt that I wear certain times to protect me from the rays. Years ago I would not notice it so much at the time but would suffer after I came in or the next day. Now, I find that my skin will tingle and will turn a little flushed. I sweat terribly also and this severely affects me.

I have read some articles that talk about the rays of the sun being able to affect the blood(by this I would assume the immune system) and cause it to rev up. I think the sun can really be a stressor for us sjoggies. Don't give up, just do it in moderation and accept it for what it is. It is an inconvenience not a death sentence. Our lives do get interfered with by all the dryness issues etc, but we are still alive and able to take nourishment. No one on this earth will escape having some type of a health "issue" before they die---we just hit the lottery and got sjogrens--so we must be special. Irish

[fatburningmachine]

This is all very interesting to me. I have a Cherokee ancestor (way back) so my skin has always tanned really nicely. But the last year or two I have become so heat intolerant and I get all rashy and burny after being in the sun. My husband plays golf for a living so I have always been in the sun to watch him compete. Now I feel like a baby if I say to my friends, "I can't  be out in the sun" .I wear thick sunscreen, long sleeved shirts, whopping hats and sunglasses. Niether my rheumy or pharmacist has ever mentioned that plaq causes sun problems. So thanks to you, now I know why this change in me. I am going to let the pharmacist know what I think about that!! My rheumy too! do you think it is the plaq of the SJ? How do we pronounce sjoggies? You guys are so smart!!

[Joe S.]

I took a long drive recently and forgot to wear a long sleeve shirt. The sun hit my arm and I broke out during the drive with a dry itchy rash. I experienced pain similar to what you are talking about.

Before the SJS  Dx I was driving home with the sun hitting my face. A big red butterfly appeared across my face. I thought "great Lupus is all I need". I got the Dx the next day at the Rheumy and was told that that may not be all that I have but she wanted to run some more tests. I now avoid the sun with a passion.

As fatburningmachine says, "Wear thick sunscreen, long sleeved shirts, whopping hats and sunglasses".

[Scottietottie]

Hi fbm 

I think it's the Plaq and the SjS. Double whammy. Sjoggies - shoggies is how I pronounce it.

Take care - Scottie 

[Dolly Dimples]

 Sandra, I too suffer with an itchy sore rash in the sun.. I cannot tolerate sitting out unless I am under shade as I also feel awful.. and that's in England

  Tonight it's June and it is rather cool,  so I sit here with fleecy dressing gown and socks on, hubby sitting with just

a  teeshirt on.. We argue all year round about how hot or cold it is and sometimes I could crawl into a hole and just scream

with frustration, no- one understands!   I don't see the Doc as I'm scared he will have me sectioned as I'm sure there is a

wee man sitting on my nose end and blowing cool air around my eyes , I hate travelling on public  transport, or shopping

centres, supermarkets that are constantly puffing out cold blasts of air in ones face , and air vents in peoples homes, my

eyes get so sore and dry, i feel like a virtual recluse as I never holiday as I can't travel, even in the car is just so bad I  give up!!      Your Doc is like many others , they just don't know anything about this affliction..  Dolly.

[Sandra]

isn't it a nuisance too. It seems every family get-together is a lovely "outside" due. I have to go to one on Sat for my nieces graduation from Veterinary college. I find myself slinking around the edges of the party....where ever there is s sliver of shade....I wonder what folks must think. My hubby and I were at a dog park fundraiser two weeks ago and met several folks to chat with and same thing we were standing in the sun talking for at least 30 minutes and the entire time I was wiggling my way to the shade hoping they would follow. I'm sure they would have totally understood had I just told them but sometimes it's kind of embarrassing and then they want to know the details...blaablabla...and I'm out to have fun not to re-live my issues..kind of wird. Everyone loves the sunshine and I don't like to dampen that but I wish just once in a while we could have an inside event! Sandra

[irish]

Just to let you know that there are many other medications that can cause issues with sun exposures. Next time you are placed on an antibiotic do a google on it and see what the info says about sun sensitivity. The interesting thing is that with these meds I didn't have many problems until my autoimmune issues got worse. Irish