Rheumatology appointment: Had another appointment... - LUPUS UK

LUPUS UK

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Rheumatology appointment

adrienneioannou profile image
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Had another appointment today with my regular doctor after seeing the connective tissue specialist. He agreed with starting a long term low dose steroid. My leucocytes are a bit low and my compliment 4 is low too. He said this indicates lupus activity hanging around in the background.

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adrienneioannou profile image
adrienneioannou
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Barnclown profile image
Barnclown

Those results are similar in my bloods...not sure what sort of responses you're looking for. What are your diagnoses & are you already on other meds?

My main primaries are systemic lupus + Ehlers Danlos type hypermobility, with sicca syndrome/sjogrens and simultaneous Raynauds & erythromelalgia. These are the daily meds we've spent the past 3 years getting me on as a maintenance treatment plan: 400mg hydroxychloroquine (plaquenil) daily + 1000mg mycophenolate (cellcept) + 20mg amitriptyline - these meds help me feel better than I have since my 20s, but I'm still reactive and certain symptoms can flare persistently, which is my version of "lupus hanging around in the background", so each year rheumatology allows me 3 x steroid injections and 3x 4 week 10mg oral prednisolone tapers. Otherwise I'm on a few repeat prescription topical antibiotics & steroids & emollients.

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