Hi! I was diagnosed with SLE in 2002 and have visited your site many times seeking out answers. Today I decided I needed to join in on the conversations and to also let out some of my frustrations (sorry).
When I was first diagnosed I was started on prednisone and plaguenil. Since then I have developed asthma-associated with lupus and shrinking lung, peripheral neuropathy/polyneuropathy, and osteo necrosis. I currently take 30/35mg of prednisone, 400mg of plaguenil, 600mg cellcept, 900mg gabapentin, nexium, hyzar, advair, singulair and use a nebulizer 4 times a day.
I am finding it harder and harder to work, but have no choice as I support myself. I usually make it through Monday and Tuesday okay, by Wednesday I come home and go to bed, Thursday I can barely get out of bed and by Friday I am in tears from exhaustion and pain. I spend the weekends in bed in order to prepare to start all over again on Monday.
I am so tired of being tired and being on an emotional roller coaster from the prednisone. We are working on getting me down on the prednisone but everytime we adjust, either the lupus flares or the asthma flares. Anyone have any suggestions? Is there different meds I could be on that would help?
Any advice you could give would be greatly appreciated.