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    Old 05-17-2015, 03:09 AM   #1
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    meds that can help

    I "might" have lupus. Any suggestions of meds that can help, red face and hands, swelling and pain, hair loss, mouth sores. Anyone experience weight gain?
    Lost, any help is welcome. Negative ANA

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    Old 05-17-2015, 06:18 AM   #2
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    Re: meds that can help

    Hi & welcome. Have you seen a rheumatologist? It would be far preferable, obviously, to know if this is lupus, because if your doctor & you were sure, you'd be eligible for the prescription meds that work best for it.

    Moving on to ANA... I believe it can wax and wane as flares come & go, so if you've only been tested once, your result may be misleading. Also, it's possible to have these forms of lupus with a negative ANA:
    (1) Discoid Lupus Erythematosus (DLE), characterized by skin lesions that scar and/or depigment. (Is your hair loss diffuse or patchy? If patchy, you could check to see if you have any discoid lesions on your scalp.)
    (2) Ro-lupus, in which *only* anti-Ro is positive but ANA remains negative. This subset is rare, though, comprising only a small percent of those with lupus. With it, you'd likely be VERY photosensitive and prone to SCLE lesions, either the targetlike or papulosquamous form. (Those rashes are described in one of the "sticky posts" located right above the user threads.)

    But another thought is hypothyroidism, which can cause symptoms similar to those seen in lupus, like hair loss, reddened coarsened skin, joint pain, fatigue, etc. Also, hypothyroidism is associated with weight gain, whereas lupus is more likely to cause weight loss. Since thyroid problems can occur standalone or along with another condition, I'd want my thyroid levels tested regardless!

    And yet another thought is RA. Something like 50% of patients "present" with a negative rheumatoid factor---and some 20% NEVER become sero-positive.

    Re oral ulcerations, one of my hardcovers says these aren't unique to lupus & are also seen in other AI's (Celiac, reactive arthritis, Crohn's, etc.).

    Until you get this figured out, here are things helpful to those with lupus:
    1. sun avoidance (sunblock, avoiding midday sun, long sleeves & leggings, hats with wide brims, etc.)
    2. OTC NSAID's for pain
    3. for oral ulcerations, gargling with buttermilk or hydrogen peroxide diluted in water; also OTC dental gels.

    I mentioned the "sticky posts". Have you seen them? One contains 11 criteria used to classify & diagnose lupus. When you scroll down, you'll find a second set called "alternative criteria" that lists things seen earlier in life in people who later develop lupus. Do these ring any bells? We'll look forward to hearing more. Meanwhile, sending warm wishes, bye, Vee

    P.S. I'm just a patient, so please read the above in that light, OK? But I do understand how crazy-making seeking answers can become. I had what was probably my first major flare at 13, then went 30+ years before getting answers. Why? Because my lupus stayed mostly subacute (meaning no major organ involvement) and because its most "defining" feature (SCLE rash) didn't appear until my early 40's. So I had hair loss, weight loss, migraines, depressed WBC & elevated sed rate, pain, fatigue, and truly miserable GI problems for years (on & off). My biggest mistake: not dragging myself to a *teaching hospital* many years earlier.

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    Old 05-21-2015, 03:55 PM   #3
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    Re: meds that can help

    If your Dr. thinks you may have lupus, perhaps he/she is willing to give you a trial on either Prednisone (works fast and is used by some docs as a "test") or Placquenil (the first step drug for lupus and some other AIs, but works slowly) to see if you respond. I agree with everything Vee said. You should get ANA repeated and all the "subset" antibodies checked to pin this down, which normally takes a rheumatologist to order them all. Good luck, I hope you get some answers and help soon.

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    lupus undiagnosis, medication, pain, rash on face

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