I have SLE and Sjogren's Syndrome. Diagnosed with lupus when I was 12, fine most of my adult life and struggling more in the past 6 years since I stopped breastfeeding my daughter. I have been fortunate for much of my illness compared to many and have even managed for the past 6 years on 5mg prednisolone and 200-400mg Plaqueni with the occasional Depo steroid injection when things have flared up. In the past my flares were predominantly rash related, so itchy (in my case) and bad looking but with minimal increased symptoms.
In the past 4 months I have been in a flare that is just not going and it is leaving me feeling very rough. I wake each day feeling pretty normal once I get my eyes open (Sjogren's causes my eyelids to stick to my eyes at night, I'm sure many of you are familiar) and am still working a full-on job, so get through my work day feeling somewhat OK. But every afternoon/evening I have started feeling really really rough - malaise I guess? Headachy, heady like I have jet lag, swollen glands, low grade fever (38-39), sore knees, eyes much much worse and very photosensitive, and so tired. I have night sweats most nights. I end up sleeping, or wishing I were, most every evening from about 7pm. It's really taking a toll on my family life and ability to keep a balance between my work and home. My poor husband, who is so patient, has to hear me complain or watch me fall asleep nearly every evening. I can't even really explain how I feel.
I have been in to see my rheumy and had steroid injections every month for the last 3 months as well as trying higher dose oral steroids for a while, but rheumy has been talking for the last couple of visits about adding mycophenolate. He told me if this injection didn't work, which it clearly isn't, he'd strongly recommend this step. I've been worried about it as I have trouble with side effects on most drugs and to be honest, am scared to see this disease progress to a place where I can't manage it.