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Hello,
I was just diagnosed this week with the SCLE (Like Veej)
Now that I know what is going on, I am starting to see symptoms that I didn't know were symptoms when they were happening.

This big "flare" that made them start digging into blood tests did not present like typical Lupus at all. It looked more like an allergy so of course I saw a deramtologist and an allergy Doc.

The first thing I can think of that started it, the docs are not even sure are related to the Lupus. I caught a nasty stomach flu from a patient. I passed it around to the family and then we all got better. At the time, I had just started Spironolactone (SULFA) for some acne that I now realize was really not that bad.
20 days into the Spironolactone Is when it started happening.
I came home from work and noticed I had very itchy hands and feet.
I took Benadryl and went to sleep. When I woke up,
I had hives all over me and very itchy hands and feet. This got worse over 2 days and because it was Thanksgiving nobody but the ER was open.
I went to the ER because my throat was starting to itch and feel funny.
This is when I started Prednisone. a 60mg for 5 days thing. When I stopped the Prednisone, My throat almost closed. This happened 2 times and they decided to call it Prednisone dependant angioedema. They gave me a list of new meds to take and an epi pen. They also reccomended that I stay close to the hospital. GREAT!!!
Both of my Doc's were pretty confident that it was Acute and would just clear up within 6 weeks. At that point they just called it idiopathic angioedema with urticaria.
Well the hives turned into dermographism which is also called the skin writing disease. Basically you can draw on my skin with your finger and it will leave a purple trail of hives that last about 15 minutes. ( I have some great photos of this).
In the end I tapered myself off of the prednisone. My throat survived.
It started on the 19th of November. As you can see it has been more than 6 weeks. I still have dermographic hives. Once off of the Prednisone, I began to have other issues.
Very sore knees, hips and my right wrist. Also my ankles swell and hurt at night. I had two mouth ulcers right on my hard palate. And yes I think they do hurt. One on my tongue that hurt a lot.
was also losing my hair in clumps.
My muscles in my thighs get really sore also. The Doc ran some blood tests also.
My first ANA was 1:320 second was 1:140
My anti Ro/ssa was positive
My C1Q assay was low
I also have a huge family history of autoimmune disease and I have had hashimotos since I was 19. (I'm 31 now)

The thing that I didn't realize was related was what I called my "heat rash" I was from Alaska and I figured my fair skin wasn't used to the sun. Over the past 2 years I would get a huge red map looking rash on my chest. It would last a few days and then go away. Of course I would just pop on another strapless and go until it showed up again. Last year it got worse and now I get flu like nausea fatigue and aches just from being in the sun.

I also have very cold hands and feet. They turn white but not red and blue.
I have also told my Primary Doc in the past that my body feels depressed. Like I can't make it get up and do the things my brain wants it to do if that makes sense. They blamed it on my thyroid but never changed my dose. Hmmm I guess we know why I feel like this now.
The Rhume immediately knew what was wrong with me. She put me on Plaquanil right away. This was Thursday. I am really worried about how I will do this summer with the sun. I am scared to death of having another flare. I still feel tired and very sore but I haven't had a mouth sore in a few weeks.
I think the dermographism is kind of fun now. My boss wrote his name on my arm and got a big thrill. He's an ER Doc and he still is impressed by it.

Anyway, that is my short story long.





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