Horrible butterfly rash flares/sick in the sun....any tips or advice? (Newly diagnosed)

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RBC_0821
Regular Member


Date Joined Nov 2016
Total Posts : 22
   Posted 12/22/2016 7:30 PM (GMT -6)   
Hi everyone,

3 weeks ago I was officially diagnosed with lupus. My symptoms have progressively gotten worse and I've seen no improvement yet with Plaquenil.

I used to have just a mild blush on my face and maybe a light headache from the sun, but here in Michigan is been overcast almost every day for about a month.....until two days ago. I was out driving for maybe an hour running errands and got HORRIBLY sick. My butterfly rash was the worst its ever been, terribly migraine, sick feeling, nauseous. I thought it would go away. I wake up in the morning and feel ok but once I get moving its worse all over again. Im going on 3 days now to no avail.

Any advice or tips for what works for you all when you get a flare like this from the sun??? I'm desperate here!!

Thank you!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7316
   Posted 12/22/2016 8:41 PM (GMT -6)   
Welcome,

You may have not yet read this, but it isn't just the sun that can trigger flares - also a lot of the big box stores that are full of fluorescent lights can be a problem.

Unfortunately I can't think of anything that helps once it's been triggered - just the normal things you might do for a sunburn to sooth the skin, plus drink plenty of water & get as much rest as possible.

Plaquenil doesn't really treat the disease, it inhibits disease progression. Plus it takes a couple of months to really start working. I don't know when your next appointment is, but if you are having problems with symptoms you may want to get an earlier visit. Often prednisone is added initially to get inflammation under control.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

RBC_0821
Regular Member


Date Joined Nov 2016
Total Posts : 22
   Posted 12/22/2016 9:46 PM (GMT -6)   
Hi lynnwood,

Thank you for the response - I had no clue the lights in stores could affect it! Looks like I may be staying home for a few days to see if these symptoms clear up.

I have a rheumatologist follow up in about 3 weeks. They couldn't see me any soon, but my primary care doctor (who I fully trust) got in touch with them and he prescribed steriods for the next 12 days. Fingers crossed those help.

Thank you again for the info!! Much appreciated smile

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/22/2016 11:54 PM (GMT -6)   
I suffer from extreme photosensitivity too and I have to wear clothing with sunscreen built in. I love clothing from coolibar.com. They cost more but they have been a lifesaver for me.

I wear their shirts, pants, hats, sunglasses, and gloves. My car has sun tint on the windows.

Not only does any form of sunlight bothers me, store lighting, and CF bulbs do too. My house has LED bulbs and the room I stay in the most has blackout curtains.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1619
   Posted 12/23/2016 2:10 AM (GMT -6)   
Hi RBC_0821. If you're fortunate once your Lupus is responding to your meds and the progression of the disease slows, you may have very few flares. Often we have no idea what caused our flare. To help us remember some common things that cause flares my rheumy has an acronym that's easy to remember:
S- stress Are you under more stress than usual?
H- hormones Are periods normal, are you pregnant or menopausal?
I- infection Do you have a urinary or some other infection?
T- trauma Did you have an accident or too much physical activity?
W- weather Is there a front moving thru, are you in the sun unprotected, is it damp and rainy?

This might not be the most delicate way to remember, but it is easy to remember and with my terrible memory, easy is good! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

RBC_0821
Regular Member


Date Joined Nov 2016
Total Posts : 22
   Posted 12/25/2016 12:55 PM (GMT -6)   
Thank you guys for the response!

I will definitely check out that clothing - my husband and j both loved fishing before and j just can't get out in it anymore. Maybe it will help??
We are also looking at tinting our windows after the holidays smile

And LOL at that acronym! I love it! Definitely will be using that smile

Again thank you all for the great advice and info!
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