Hello all 👋👋👋. 8 months ago, I was being screened at the metabolic bone unit for IV bisphosphonate treatment. The rheumatologist was interested in my active sjogrens, and suggested a trial of pilocarpine. I went home, googled pilocarpine...the info I found did not make me like the prospect of a trial ...loads of really spooky side effects...but, as eye drops, at least, perhaps easier to undergo. So, I posted a ? here on forum, which got a good discussion going....and I promised to get back to forum after I'd talked to my medics
Then I had loads of distraction from any sort of meds experiments due to 8 months of typically roller coaster sle etc flares/infections stuff involving referral to immunology. But, meanwhile, I made a point of talking to all my regular clinic medics about pilocarpine: asking each consultant if a trial could be worthwhile (I am annually monitored in the usual collection of clinics: eyes, ENT, gyn, urology, neuro, oral surgeon/periodontis etc). Now I have my consultants' consensus and am ready to share:
For the time being, my medics all think the pilocarpine risk/benefit ratio is too poor: I'm advised that only a tiny % of patient respond positively to it. And, because it adversely affects the autonomic nervous system, side effects are widespread and often severe. And my a.n.s. Is already struggling enough as it is
So, no pilocarpine for me! Phew, cause this year I'll see how I react to having my first IV zolendronate osteoporosis treatment...that's plenty for me!
would be very interested to hear more from anyone who is happy with pilocarpine...am not thinking "never, ever" re a trial...just no experimentation for the time being