I'm following on sort of sideways from a ? Uzi41 just asked in the forum blogs section about having flares while diagnosed and on lupus meds
What about when you've had years/decades of flares but hadn't been diagnosed with SLE yet (although you DID have SLE) so you haven't been on the sort of targetted meds that could've taken the edge off your sle generally, and maybe even slow progression down a bit... but instead you were on meds that only treated flare symptoms individually..... Is the progressive SLE damage you inevitably experienced reversible?
I feel that a lot of us have spent years in this situation.....because so many of us have been told by drs that we've had lupus for many years before diagnosis. in my case, i.'m told i was in this situation cause no drs thought to look carefully at my overall medical history or my bloods autoimmune profile: i guess they just treated the bits of my bod that appeared most affected by the current flare (eg prescrip NSAIDs & pain killers for joint & muscle flares, prescrip proton pump inhibitors & antacids for upper GI flares, antibiotics for septicaemia, tendinitis and pleurisy etc etc). And usually these flares would eventually more or less gradually subside to a simmer (partly, i now think, cause I was spending so much time flippin researching how to lifestyle-manage my ridicuolously body-wide symptoms and was pretty conscientious about doing what trial & error taught me helped). I know my lupus must have been relatively mild, cause i only ended up in hospital a few times...but even then, the drs never looked at me closely for an underlying systemic or autoimmune condition....
So, some of us, seems to me anyway, are having to get through loads of flares even with out lupus meds. I guess this could mean we're lucky to manage without the side effect issues lupus meds create......but I do wonder if my SLE would've progressed less by now if I had been diagnosed and treated earlier.....I'll be 60 in oct but feel more like 80 already....and, due to my health issues, have actually always seemed 20 yrs older than most everyone around me.....although, of course, on the surface I look pretty good when not in a flare: typical!!!!!
Hope this makes sense....I'm very greatful to have finally been diagnosed 2+ years ago and immediately put on plaquenil 400mg which is helping a bit generally, but disability in my extremities (due to a typically complicated mix of issues) and fatigue don't seem to be reducing.