I was doing a search to find out more about this incredibly nasty rash that popped out last week and I came upon this website. In some ways I feel very fortunate that my lupus isn't any worse than it is and yet it still ticks me off that I've had to make so many adjustments. I was diagnosed almost 2 years ago but was having many signs and symptoms for 10 years, the rash included. I am on plaquenil and methotrexate and the rash hadn't recurred for the last 2 years. I am self diagnosing (the biopsy reports should be back in a week) but I think I have urticarial vasculitis. 40 mg of prednisone is the only thing that gets it under control, (luckily I only had to take it for 5 days). With the meds I'm on I have only a little pain which is tolerable but my big complaint is fatigue, fatigue, fatigue. If it wasn't for that I would be pretty content. I have been a very active person my entire life and that is my biggest complaint. I just quit my job (I'm an occupational therapist) due to the fatigue and the fact that I catch every bug I'm exposed to so I have a high absentee rate. My rheumatologist who has usually been very understanding, said that she would think I should at least be able to work part time. I suppose I could but then I would have nothing left for my husband and kids. I told her that even being on meds I just keep feeling like I'm sliding gradually down hill. Is that the typical progression, just gradual decline? I have no major organ involvement but have Raynaud's,
occasional thrombocytopenia, frequent pneumonia/bronchitis, and a "foggy" brain. I guess I have probably complained enough, this has been my whine session but believe it or not I'm normally pretty upbeat.
Thanks