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New Member

Date Joined Jan 2012
Total Posts : 2
   Posted 1/28/2012 6:22 AM (GMT -6)   
sad  Hello , I've finally gotten the guts to join this community of wonderful support. I am (also :-) ) on Plaquenil and a prednisone taper and have bee up since 230am EST with burning painful joints...surprise surprise. I am wondering about people who have also tested ANA negative but have a long term SLE diagnosis?? (positive for sjogrens etc..) And feel that noone ( specifically family members)  "gets it?" I am also wondering about members who may have a substance abuse history and how they manage their pain with the inevitable narcotic interventions during flares? Thanks so much

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 1/28/2012 10:06 AM (GMT -6)   
Hi! and welcome,
I never did "drugs", smoked anything, or drank anything more than one summer beer, but have avoided narcotics since dx. in 2005. I take meloxicam daily, and use a Flector patch prn, which helps me immensely, where ever the joint pain is worse. Hope you feel better soon,
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U, Calcium, Flector patch prn, Ambien and Elavil every night. Advair, Albuterol and DuoNeb inhalers.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/28/2012 11:05 AM (GMT -6)   
My family tries to understand but they just don't get it either. It's aggrevating to be in constant pain and no one will understand it until they have it.
I've learned to say, "I'm okay" when someone asks how I'm doing in passing, when I really feel terrible. Because they really don't want to hear my gripes.

New Member

Date Joined Jan 2012
Total Posts : 2
   Posted 1/31/2012 7:18 PM (GMT -6)   
Thank you so much to couchtater and suetoo for responding to my newbie email. Makes me feel less alone :-)
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