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Hi, there. I was diagnosed in April of 2004 after about six months of whole body itching, hair falling out and thick "lupus dandruff", rash on my face, arms and back, little nobby bumps with purple centers on my fingers, joint pain, strange fatigue after sun exposure, strange bruises and those little pinprick blood dots on my skin (petichae or something), some kind of red/purple vasculitis circles on my thighs, swollen lymph nodes. Jeez, did I leave anything out, lol. Oh yeah, my kidneys were damaged somewhat by the time I was diagnosed, but I have a mild case. My doctor shocked my system with some high (60 mg) doses of steroids that gradually tapered down over a year or so and everything has pretty much stayed in remission for the past 5 years with me taking 5mg prednisone and 200mg plaquenil daily today, with just some minor flare-ups. I have had two kidney biposies that showed membraneous nephritis in my kidneys.

What I believe was my first definite episode was about 1994, when one weekend, I just felt ill and had swollen lymph nodes in my neck, those bumps rose up on my fingers, all those tiny red dots on my skin, and my skin started to be intensely irritated for no reason whatsoever. I was put on a dosepack of steroids and told I had a fabric softener allergy (LOL). The symptoms mostly went away. Over the years I would have isolated incidents with strange symptoms that came and went: nosebleeds, episodes of lockjaw, my skin would sting as if something were actually stinging me, the insides of my ears would get raw and inflammed and clogged with scabs that affected my hearing at times. And every so often, a few times a year, I get this jolt of pain that runs up the back of my neck and feels like an electrical shock. The jolt only lasts two or three seconds, but it leaves me so stunned and just drained. Reading online, all of these symptoms are not strange for people with lupus.

Unless you have one of the most difficult cases with severe organ involvement, you can mostly expect to live as long as anyone else. Even those cases can be treated so much better than in years past. What you need is to be an informed patient and a doctor who will see to your whole body being well and send you to specialists when needed and who will take preventative measures before damage is done that can't be reversed. Best of luck!

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