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Re: Lupus
Jun 23, 2003
Hi Linny
Yes its me who has lupus. I have the systemic form. Symptoms are dry mouth, mouth sores, nose sores, mitral valve prolapse, costrochondritis and chest pains, joint pain, fatigue, some low grade unexplainable fevers, headaches, loss of memory and brain fog. I'm lucky because it isn't in my kidneys at this time. I have been ill for almost 6 years and diagnosed 5 years. Wierd symptoms other than these come and go. My dad has rheumatiod arthritis and my cousin has MS. I have had both positive and borderline ANA. And always in a speckled pattern. Low white count, but not TOO low. However, sometimes when I'm feeling the worst, the blood works shows no flaring at all, and sometimes its the opposite. My acne started developing at the same time I was becoming ill. Prior to knowing what was wrong with my, I took minocycline and all it did was get my sicker and sicker, and it never touched what was going on in my skin. I've also tried erythromycin, tons of topicals, the most recent being azelex, and accutane. I have also developed scaly patches of skin on my face which are lupus, and I've had full body rashes.
I had an emergency hysterectomy during the time period when I wasn't feeling well and prior to being diagnosed. Then about 1 year later, my grandma suddenly passed away and the stress from that combined with everything else brought out the bigger symptoms like the chest pains, full rashes and butterfly rashes, and severe joint pain. After being told I was literally crazy for at least another 4 months, I was finally diagnosed with lupus. Long drawn out story.
As for the acne, I'm not sure . All I know is I was on 125 mg of spiro daily back then with crystal clear skin and one day it just stopped working. The rest is a long 5 year saga of trial and error. The derms say its acne and even if it is caused as a result of the lupus, they still have to treat it as acne. My opinoin - if I'm being honest - its never looked (to me) like typical acne. Most of them are tiny oil filled pimples. I may have clear skin in an area one day and the next I could wake up with 10 small oil filled pimples, the size of a pinhead, all clustered in a 1" square space. I've recently come across a new topical called elidel that I'm considering. A long shot I know, but it is an immunosuppresant...non steroid, that is used to treat excema. I know this isn't excema, but it , to me, is papulopustular something. I have looked on a lupus site and there are people using it as well. Maybe it wouldn't work or it would make things worse, I don't know, but I'm thinking pretty seriously about it.
I know that I may be like everyone else and be treating just regular old acne..(not to minimize anyone elses condition)....but in the case that it could be caused by the lupus and I could treat it more effectively, I know that I want to try. After my trip, I am considering getting a biopsy done also .

By the way, on the lupus board, there is an old post from someoned who was diagnosed with lupus and adult acne. Turns out it was caused by the lupus and the person now treats it with another cream , although it is a steroid immunosuppressant cream. I would rather try a Non steroid cream. For better or worse, I do intend to talk to the derm about it.
anyway, as far as your symptoms, if you go to Lupus . org, there will be a lot of symptoms listed there along with other information. I sincerely hope you don't have lupus of any type, but raynauds is another auto-immune disease and many times things seem to intermix. ie, I have lupus and the start of sjogrens, I also get the cold numb hands and fingers - a sign of raynauds. Many times, the dr will treat the symptoms as they are , with or without a concrete diagnosis. Many people who have any autoimmune disease, have symptoms of 1 or 2, but no definate lab work to support it. My lab work fluctuates constantly. But IF YOU feel something is wrong, make sure you are persistant. Lupus is hard to understand and many drs , some of which I've been to, just pass it off. I was told there was nothing wrong with me by 5 drs before I was actually diagnosed. Don't let them give you the run around.

Keep me posted.
L





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