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
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I tried pilocarpine eye drops in water and taken orally (on the advice of a doctor). It had a mild but definitely beneficial effect on my dry mouth symptoms.
I was interested to read Louise-a's comments below about it helping with the fatigue as well - maybe I wasn't taking a high enough dose.
What dose have you been offered? It certainly wont hurt to give it a try.
thanks for your reply & encouragement jayne! i'm v interested in the eye drops in water taken orally route...what dose did you take, and how often?
i also posted a similar question on our lupus uk HU forum & have had several good replies. one of them is from a member who experienced more fatigue on pilocarpine (she/he called it 'fading away') so had to stop treatment, so i guess this thing can swing several ways (as usual with meds, right?)
so far, my drs & i haven't got to the point of discussing dosage etc...my plan is to considered this at my 3 monthly rheumatology appt in march. my feeling is that i should give pilocarpine a trial, but that the result will not be straight forward. yesterday the metabolic bone unit rheumatologist said that these choices are largely about balance of risk (of course). as i understand it, this consultant is mainly urging this pilocarpine trial because he feels my version of sjogrens' dryness throughout my body is the main source of my persistent predisposition to infection (which is aggravated by taking the immunosuppressant mycophenolate daily (even at only the relatively low dose of 1000mg).....BUT, a year on, this daily mycophenolate has given me the first 12 months since the early 1980s of chronic lupus-related neuro cerebral symptoms so profoundly damped down that i simply no longer feel as if i have faded away with 0 stamina & 0 resilience completely all of the time....and over the decades i've tried everything alternative to get out of this chronic fatigue/NC symptoms fugg).
Hi - I am 55 years old, living in New Zealand. I use pilocarpine, and I do find it takes the edge of my dry mouth, particularly at the end of the day. From what I read, and my own experience, you need to gradually increase the dose, and always take after food. Hot flushes will result if you take on an empty stomach.
The biggest help I have had is experimental helminth therapy. If you are interested in learning more - below is the link to a video of a presentation to a children’s conference in the US– Dr Parker is an immunologist, and here he relates the allergy and auto-immune problems in the developed world to cognitive difficulties and autism. It does also provides a good general background.
The doctor I saw was an older man in his late 60s who said this use of pilocarpine was once well known. He recommended 5 drops of the eye drops in water up to 5 times a day taken orally. (Commented that 'you can't take too much in that form but don't drink it neat from the bottle!')
I'm taking it for dry eyes and mouth and find it's very effective at keeping symptoms levelled out. No side effects noticed so far and I've been on it 6 months.
Take 3 Pilocarpine daily really helps. no side effects but that's me...check with Dr again I am in the USA it is approved here for many years. Good luck!
Thanks Molly....that's good to know...during the past year I've learned more about pylocarpine....and my chief of lupus clinic advised to avoid it because of my Dysautonomia: apparently patients like me are more likely go even more haywire in pylocarpine....so am avoiding it for the time being...but as usual am never saying never 😜🍀🌷
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