[Hatty]

Hello

I'm desperately seeking some answers as I'm confused and a bit freaked out. I've had lupus for probably 20 years (was dx as juvenile arthritis for 10 of them) but have never had problems with lighting or sun. Last week I went to a class (1hr) where there were two purple UV strip lights, and the next day I had a malar rash. This has faded pretty much but I am having a really bad flare of joint pain and fatigue, worse than I've had for ages. I am on plaquenil and celebrex.

Does this mean I am now photosensitive? Has anyone had it develop from nothing? Should I start being careful with sun and/or strip lights? We have a house full of low energy bulbs and I've always just merrily sunbathed :/, could this in fact have accumulated and be now causing problems? I am so confused, I just thought that if I had no rashes I'd be fine, but this is ridiculous, I can't move.

I'd be so grateful for any opinions!

xHatty

 

[Rose Maclean]

Photosensitivity

Hi Hatty,

I have never been photosensitive until last year and am now extremely sensitive. It actually assisted me in getting diagnosed, but I have been ill for years. There has definitely been an upkick in my disease activity which might be the cause of this, but it certainly is the one thing that hasn't been damped down by my meds.

Good luck

Rose

 

[Hatty]

Dear Rose

Thank you so much for your reply. What happened when you became photosensitive? How can you tell if something is a problem? I don't know whether because my rash has faded that I'm at least not doing any more damage (eg in places with strip lights, eco bulbs at home etc) or whether it might be happening without me realising it. What happens with you? How have you adapted to it? Sorry for all questions, but I feel like the goal posts have been moved, having had a grip on this blasted disease!

xHatty

 

[onetay]

Hi Hatty,
It is often advised to avoid the sun with or without sun sensitity. It seems that the uv rays are bad for normal people but even worse for lupus patients. You should do what you can to avoid the sun and the lighting when possible. I would also advise to speak with your doctor about the new developement.

I have always had some form of sun problems but over time it has gone from some problem to no sun without active problems. I hope you can get past this with some meds and less sun.

 

[Douglas]

Howdy Hatty,
I had never shown the slightest photosenitivity, even enjoyed getting sun to improve my dead fish belly complexion, then one day I went out for a walk without gloves, the back of my left hand boiled up, joints swoll up, yadda-yadda. Suffice it to say I now wear a hat, gloves, long sleeves, etc all the time.
Sorry to have you joining the ranks of the sun-avoiders.
Douglas+