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Re: Mild lupus
Dec 14, 2012
Jozee, hi & welcome. Hmmmm.... Did your rheumatologist explain WHY she diagnosed lupus, meaning which criteria you met? Those criteria are in a sticky post (permanent info post) above the user posts. Generally you have to meet 4 of the 11 to be dx'ed with systemic lupus; this can happen over time, meaning not necessarily simultaneously.

It's possible to have SKIN-ONLY lupus (you meet fewer than 4 criteria), in which case treatment might not be offered if rashes can be well-controlled by sun avoidance/protection. (If this applies, she should have explained.)

It's possible to meet the criteria for systemic lupus but not have symptoms, or so I've read. (If she thinks this scenario applies, she should have said so.)

It's possible to have systemic lupus but be "subacute". But that only means there's no major organ involvement (heart, lungs, kidney, CNS, etc.), so there's still a lot of room for problems! For example, I'm classified as subacute; but over time I had fatigue, pain, elevated sed rate, depressed WBC, weight & hair loss, urinary & GI problems, migraines, recurrent nonscarring rashes, etc. As soon as my bloodwork showed the anti-Ro autoantibody & skin biopsy proved my lesions were lupus-specific, I was put on Plaquenil. That's the drug of choice for mild lupus. And it's steroid-sparing, meaning people who take Plaquenil may be able to avoid steroids entirely, or be able to take smaller doses of steroids.

To me, if you meet the criteria for systemic lupus AND have symptoms, it doesn't make sense to wait until major organs are affected. That's the whole point of a med like Plaquenil: it's made for just such milder patients.

But *maybe* her hesitance is because your hypothyroidism can cause many of the same symptoms that "mild lupus" does? Is she waiting to see how you respond to your thyroid meds? (If so, she should have said so, in my opinion.)

I really hope others post their thoughts. Among us, I think we'll be able to help you work thru this very foggy communication, so hang in there. I hope you post more soon. Best wishes, Vee





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