Hi. I'm not a lupus sufferer but I have an auto-immune eye condition. I was prescribed cell cept which I took for approx 2yrs. My lymphocyte count was always low while taking this drug (along with low dose of pred) but was stopped before eye surgery. Eighteen months later I still have chronically low counts. Has anyone else experienced non-recovery of lymphocytes after discontinuing immune-suppressing drugs?
Any insight would be welcome.
I have been referred to haematology but no one at the eye hospital seems to be able to give me an answer. Surely this can't be a one off ?
I'm not in your position, but even so maybe my experience can be useful in some way
My slight lymphopenia has been chronic for many years from way back before my infant onset lupus diagnosis was recovered in my late 50s 5+ years ago (at which point I started on immunosuppression - since then my lymphocyte count hasn't dropped any lower).
After several years on daily combined therapy lupus meds, my lupus & Vasculitis clinic referred me to immunology because my lymphocytes continued just below normal + my already low immunoglobulins (G, A, M) had also continued below normal. For close on 2 years now, I've been thoroughly investigated by immunology. Meanwhile there has been no question of ceasing my immunosuppression (although a year+ ago we tried 5 months off daily hydroxy which seems to have permanently caused my peripheral neuropathy + RP&EM to worsen). Instead I'm now on daily prophylactic antibiotics prescribed by immunology. It appears I've had a early onset primary immunodeficiency (PID) running alongside everything else for some time
Meanwhile, it seems my sjogrens is more active than my lupus, and my hospital eye clinic has had to add daily ciclosporin drops to my existing SS 'dry eye' daily combined therapy treatment plan due to active inflammatory process (filamentary keratopathy + no meniscus) endangering my corneas
Do you know your baseline lymphocyte counts? Am wondering if you have a history of low but within normal range results before lymphopenia actually developed?
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