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pbeth
New Member


Date Joined May 2011
Total Posts : 4
   Posted 4/27/2013 6:40 AM (GMT -6)   
Hi All!

Won't bore you with the long list of details, but here's my background in short: One year of lupus-like symptoms, 11 specialists, initially diagnosed with Fibro (no surprise), finally a UCTD diagnosis, a myriad of pain drugs (diclofenac, arthrotec, relafen, etc), then Plaquenil (my best friend!), in remission for approx 1 year...

...then BAM! Went daytripping with my hubby on a beautiful sunny day. Walked the streets of quaint little towns. By evening was tired, by the next morning had headache and malar rash, by that afternoon I crashed: extreme fatigue, joint and muscle pain... blah blah blah. Lupus had apparently decided to pay me a visit. Hellllloooo, Lupus! rolleyes

My rheumy at Johns Hopkins whom specializes in arthritis permanently referred me over to the lupus side, had me do labs, and immediately put me on 'roids (steroids the non-muscle building kind) tongue I like to joke about that. Have to keep a sense of humor about things. I saw my new lupus rheumy and this is what he told me. I'm in a gray area. I have UCTD that points to Lupus b/c of increased immune activity and I have Lupus "markers" - genetic?, blood?, I don't know. Didn't ask. He said the diagnostic term used doesn't matter as it's for research purposes only. What is important is that the treatment is the same. So, he gave me huge shot of Triamcinolone. Said to stay on Plaquenil and if that doesn't mediate the flare, then we will look at CellCept, Methotrexate, etc. depending on my symptoms. I'm also to take the necessary precautions where the sun is concerned.

So now I'm scared of the sun because I don't know how much my body will tolerate without going into another flare. I bought Neutrogena brand ultra sheer, broad spectrum facial and body sunblock with helioplex. Bought SunGuard which you wash your clothes in and it give them UPF protection. Now plan to buy dark sunglasses, wide-brimmed hat and some gauzy, lightweight long sleeved clothing.

Admittedly, I'm saddened by the turn of events or more precisely, symptoms. With the Plaquenil, I was leading a normal energetic life, and I feel like I'm back at square one again. I know I should feel lucky that I have a mild case of lupus. I guess it's just a process of acceptance.

Thanks for listening and glad to be here!
Pbeth

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/27/2013 3:41 PM (GMT -6)   
If you're sun sensitive you need to avoid the sun during it's zenith (11am-4pm). That is when the UV rays are at their strongest.
I did the Neutrogena sunscreen you mentioned. It didn't help me, but I'm a severe case of photosensitivity.
Try coolibar.com for some good SPF clothes.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/27/2013 7:35 PM (GMT -6)   
 
Hi,
 
     My sun sensitivity goes from extreme to mild depending on what, I really don't know.  I have been covered beyond belief, spend one hour in the sun and I am knocked back.  And at other times, I am not well-covered and spend hours in the sun and get away with it.  I always wear a hat.  Used to dislike them, but they have become my new friends.  I also like the sun protective shirts made by Patagonia.  They are handsome, lightweight and do block out the rays.  Like Joy, I try and avoid the sun during those zenith hours....but I am not always good at it.
 
Laura
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