This is the first time I've posted on the net--guess it is also the first time I've had Lupus so everything is oh so new. I've read almost all the posts here and I am feeling more positive about things.
I am 28, male and had MCTD since I was 21. Before July this year I only ever had pain in my lungs and my joints--I felt I was managing it. I went to the gym regularly, felt great and have come off all meds for 2 years. This July, my wife and I went out to an outdoors spa and soaked in the sun and sulphur pool for 2 hours. Right after that, I had the malar rash, fever and my ears looked like they were peeling off my head. Not nice.
After 2 weeks my doctors told me I now have Lupus (SLE) and I am highly photosensitive. I am now on pred, plaquenil and calcium.
I went through a period of low--especially when I had to look in the mirror. Yes, although I'm a bloke, I have to say I do care what I look like. I am a university academic and so having to stand in front of 200 or so people with what looks like to be plague isn't very nice at all. Luckily my students are understanding and mature about it all (something I can't say for the general public, considering the types of crap I hear people throw at me).
I have now accepted the fact life is going to be different and it's a matter of managing my symptoms.
I do have a few questions I hope someone to shed some light on:
1) I found that driving in the car can give me a rash--so now I have installed lovely UV filters on the windows and things are great. The problem is my house--we bought the place for its lovely natural lighting. Now I am stuck in my dark study (boarded up with cardboard) for most of the day until the sun goes down. UV filters for the whole house isn't possible as I have a lot of windows--and they cost a bundle.
My first question is whether fabric curtains do anything when it comes to UV blockage? I have researched on the net and all I found was a study in the 1980 that compares UV penetration of cotton and polyester (close knit polyester won btw). What sort of window treatment do you guys use? I am just confused because I know even though the curtains may be "blockout" for visible light--the UV may still be coming through. Is my cardboard dungeon really stopping the UV? Surely--someone has investigated UV penetrative strength through different materials SOMEWHERE (I've seen more obscure research in my time)~!
My second question is about discoid lupus lesions. I know what they look like and what sort of damage they can do. I wonder if a prompt treatment of steroids can usually prevent permanent scarring (e.g. Betamethasone cream...)? I already take all the precautions I can take--sunscreen, hat and avoid bright areas (and that's when I am INSIDE my home~!!!)
Thanks for reading my rant--I can't help but go into the long winded lecture mode. Anyhow, it's a little late for a Merry Christmas so I'll wish all of you a happy new year instead~!