It's taken 4 years nearly, but my amazing rheumatologists have figured out that my version of (currently) seroneg SLE + Sjögren's features leukopenia + hypogammaglobulinaemia & our head of clinc has just referred me to immunology. I think it was recent persistent kidney infections + comprehensive metabolic bone unit blood tests prior to starting IV osteoporosis treatment that resulted in these insights (my long term chronically low leucocytes, neutrophils & immunoglobulin & IgG, IgA, IgM have gone even lower following 3 1/2 yrs on daily hydroxy 400mg + 1 year on daily myco cellcept 1000mg with 10mg 4 wk pred tapers to damp neuro cerebral symptoms as needed). Fortunately we do have baseline bloods from before I started lupus meds, which prove I've had these low bloods results for some time.
anyone familiar with my version of lupus thanks to this wonderful forum, will know it was infant onset, but the early diagnoses were lost after I left home @21 & moved to the UK. So, for most of my adult life (I'm now 61) i spent a lot of time at the gp's & various hospital clinics having emergencies damped down/operated on or whatever, plus secondaries diagnosed & treated (including recurring persistent infections) without the nhs spotting the underlying lupus..until nearly 4 years ago...of course, alongside all that there was non-lupus stuff going e.g. Spondylosis due to Ehlers Danlos Hypermobility & a bad fall on my head in childood. Anyway my lupus treatment plan has made a MASSIVE positive difference...2014 was the best, most pain & symptom free year since the 1970s
But now my consultants are concerned that my chronic tendency to low WBC, gamma globulins, complements & haematocrit may have been made even worse by either/or both: hydroxy & myco. Our head of clinic instructed me to have more bloods done + a Bence jones urine analysis & to come off Hydroxy last weekend. I'm now waiting for the immunology appt....getting my head around all this: am delighted my version of lupus, sjogrens etc is becoming even better understood....but dread having to come off my beloved myco too...and have to try another immunosuppressant eg rituximab apparently is an alternative in cases like mine....or whatever
And I sure would welcome contact with anyone here who is going through or has gone through this immunoglobulins+WBC+ anemia with recurring persistent infections thing....