Am 61, living in the UK, with infant onset systemic lupus (probably due mainly to inutero DES exposure). That early diagnosis of my version of lupus got lost when I moved to the UK from the USA in the '70s. the nhs has been busy coping with severe flares of various types + treating me for diagnosed secondaries most of my adult life. Meanwhile I've conscientiously lifestyle managed everything via antiinflammation diet & supplements + meditation + gentle exercise etc etc. It's been quite an ordeal, but I've somehow had a happy family life and a good career, although my degeneration meant disability causing early retirement
Thankfully 4 years ago a brilliant rheumatologist recovered the lupus diagnosis based on clinical exam + medical history & her treatment has been very effective. She also diagnosed sicca syndrome (ANA neg Sjögren's with low IgA), which fits with the diagnosed conditions affecting, basically, all my 'holes' which are all pretty much manageable if I comply with all their treatment plans. I'm globally hypermobile with Ehlers Danlos characteristics. none of my sicca type conditions are dramatically benefitting from my lupus meds (but my chronic joint pain & neuro cerebral symptoms are damped down well by daily hydroxychloroquine 400mg + amitriptyline 20mg + mycophenolate 1000mg with 3 x 10 mg oral Prednisolone tapers per year as required).
Today in clinic my rheumatologist's similarly brilliant metabolic bone medicine colleague suggested that sjogrens has become my primary & that I might benefit from a trial of pilocarpine (brand name salagen). I've checked pilocarpine online, and got a basic grasp of what it's about. Am a bit concerned that I might over react to it, cause I over reacted to a trial of the vasodilator nifedipine 4 years ago when my simultaneous raynauds & erythromelalgia was diagnosed just before my lupus diagnosis was recovered. But am open to at least trying pilocarpine....apparently it might help damp down my version of sjogrens, which could be partly causing the flare of infections I've had lately (obviously, the daily myco immunosuppression also is playing some part in these infections....and this will also be addressed)
So, I would be very glad to hear about others' experiences of pilocarpine....I'll feel better about a trial of pilocarpine if I've heard something from someone on forum...am not afraid of bad reactions, just want to go into this with my eyes wide open