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Hi again

While lupus is treatable, its VERY hard to find the right concoction of meds, and lupus is not curable. Although it can go into remission for some people. As far as the butterfly rash...if you are out in the sun, it may or may not get worse. Its not caused by the sun, but rather the sun can induce a flare of the disease, thus making the rash appear more vivid sometimes. But the sun does actually cause flares in lupus resulting in fatigue, joint pain and other lupus symptoms. Some people actually have lupus symptoms that aren't even listed 'on record'. for instance, a girl on the lupus board was being treated for adult acne only to find out it was caused by the lupus, which I think may be my case too. Pimples that have come and gone for 5 years, tiny and oil filled ...never really responded to tradition methods of acne treatment....now I am using elidel non steroid immunosuppressant cream and If I apply it to a 'pimple' in the am, it makes it go away within hours of the day. That doesn't make sense to be regular typical acne does it?? But the rheumy, derm, and general dr have all said that they were'nt sure and assumed it is adult acne. I'm not out of the woods with this by a long shot, but the elidel as a spot treatment is amazing.
As far as hair loss and weight loss and your fatigue and mixed up sleep, those are symptoms of lupus. But a lot of people have hair loss, a lot of people have fatigue and other unexplainable symptoms. It comes down to you. Keep a journal for a little while. List every symptom, take pictures of the rash at different times. Keep track of how you feel after you've been in the sun...not just right after, but even a few hours or days later. Take your temp daily and look for low grade (that you may not even be aware of) fevers. And keep track of your weight and what you eat. They will ask you all of this anyway, and this way you can go right on to step two. by the way, sometimes when I feel the worst, my bloodwork is fine, and sometimes when I feel good, my bloodwork shows activity. I've had such pain that I could hardly stand it, and yet my blood shows nothing. Weird. Also, make sure and get a FULL work up. On the website I listed it will give a list of all lupus related blood tests. I know how it is to want a name for this and be told you're not just crazy . I went through it. Do YOUR research BEFORE the appointment. Print it out and go armed to each and every appointment. And YOU make the decision whether you need a second opinion or not. Don't let them dismiss you. You could have a thyroid problem or something else instead of lupus. I didn't have access to the computer when I got sick and didn't do much research. I let them tell me I was nuts and then I started to believe it. AND ASK if the DOCTOR you are making the appointment with is EXPERIENCED with your symptoms.

Hope this helps.

L





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