[Hatty]

Hi there
I'm really hoping someone can help me as I can't help worrying about what will happen next! I've had SLE for years and always sunbathed with no problems, but now all of a sudden (after exposure to UV lights in a class) I have what I'm pretty sure is a malar rash. Does this mean that I am now going to have problems with sunlight? It's freezing and foggy here so no way of knowing, but will I need to wear hats and all that in the summer? It's come as a shock to have something on my face, I know it's really vain but I was used to just hurting! It's faded a bit now, but I'm scared of it getting really bad in the future. Do these things progress? My other symptoms are also bad at the moment. I do remember at the end of the summer I started to find on hot days that I felt really ill, I wonder if that could have been sun in fact?

Also, I have had what I thought was eczema on my fingers and palm for ages but I just can't get it to go away, even with the strongest steroid creams. My hands are becoming a bit scaly. Could this be lupus too or is it just a coincidence? I just wondered.

Please please reply with any help as I am freaking out a bit about what is round the corner, I hate the way lupus always bites you with something new when you are least expecting it...
xHatty

 

[Pink Pearl]

Hi Hatty,
You are describing what I felt at the beginning with lupus sun problems. I have trouble with some of the larger grocery stores as their lighting makes it very hard for me to see without squinting. It is just the wrong type of light waves I guess.
Hurting, aching, fevers, nausea, headaches, those sound like me when I would get in the sun. Not good....best to avoid it.

I have found that using a greenhouse in early season enabled me to be outside with less reaction. Just the diffuse light from the cover gets me able to be there. I was amazed when it helped, pleased, but grateful to be able to be out in the "hot" hours of the day at all. But, this was after 17 years of not being able to be outside during the day at all.

The danger hours of summer are from around 10 am to 4 to 5 pm. Exposure during those hours is best done while totally covered as much as possible.
Sally

 

[Hatty]

Dear Sally

Thank you for your reply! It sounds like things must be really difficult for you, and glad your greenhouse helps! When you say 'at the start of your lupus sun problems' - did you have lupus without sun problems for a while? I am trying to work out whether this is a one off (I'm now in a big joint pain and fatigue flare) or whether I am becoming photosensitive, and should be changing all our low energy bulbs and wearing hats and all...

Thank you!
xHatty

 

[halfpintfl]

Hi Hatti, I have been where you are now, so don't panic. ; some rules; 1-the sun is your enemy, 2-stress =pain, in every sence of the word. If you Have to go outside, then cover up. Ask your GP for a referral to see a Dermatologist, you deffinately need one in your pocket. start your jopurnal , list all your symptoms, new and old, and keep it up to date, that will help us think if you need a Rheumy or not. Be well and smile.

 

[Monica3]

Sun symptoms better now...

Dear Hatty,

When I was first diagnosed with lupus (and not on any meds) my skin felt prickly when out in the sun, which was followed by a red rash. Now that I have been on Plaquenil (400 mg daily) for almost 2 years, I no longer have these reactions, though I am careful in the sun. Hope this gives you some hope! I have no idea how may others share this experience, but I think I read on this site somewhere that Plaquenil can help with this symptom (though perhaps not everyone).

Monica

 

[Rose Maclean]

Sun sensitivity

Thanks Monica, that post of yours gives me hope. I haven't been on Plaq for more than 3 months and have been battling for over a year with severe sun sensitivity. i get a rash and it really makes me ill.

Hope for Hatty and me!

Thanks Rose

 

[Hatty]

I have been on Plaquenil for 5 years now, not sure how that works. I'm still not sure if this reaction was a one off or whether I should be running round (as if changing lightbulbs! Mid flare I'm now realising the rash is the least of my worries..

Did photosensitivity appear suddenly and then get worse with any of you?

xHatty

 

[angie1]

Hi Hatty,
I have always been sensitive to the sun, even as a little girl. My malar rash came about 5 years into my diagnosis and plaquenil has not helped it. It definitely gets worse in the sun or under the lights at work. I have tried every cream that says it works for redness, but have found nothing. It really is frustrating and I feel for you. I find myself looking at others with nice pale skin and feeling envy. Hang in there, maybe there is a miracle cure on the way.

Angie

 

[lazylegs]

Hi Hatty,

Perhaps the rash was the first sign of your coming flare. Only time will tell if the rash will be a regular thing or not. I recommend taking precautions just the same.

Take care,
Lazylegs