Pilocarpine

[ER66]

Hello,

I've been prescribed pilocarpine for my severe dry mouth. I have sjorgens symptoms including dry eyes too - which I am managing with eye plugs and lots of eye lubricant. The dry mouth is horrendous. I'm employed in education and by Thursday I've lost my voice and have sore throat. Pilocarpine produces saliva but I'm suffering with side effects. Can anyone give me advise or any support please?

Thank you,

E x

[bones-bones]

What side effects are you having ?

[ER66 in reply to bones-bones]

Thank you for your reply.

Within 30mins I'm having severe hot sweat. Shaking, blurred vision and 'palpitations' feelings and a worn out feeling.

E x

[bones-bones in reply to ER66]

Yes it has this effect on some people including me It felt a bit like having flu. I chickened out of taking it !

[Barnclown in reply to ER66]

Do be cautious: my rheumy told me no way would she prescribe pilocarpine for my widespread multisystem sjogrens signs & symptoms because of my history of dysautonomia (including low BP, myclonic jerks, pre-fainting etc etc). Even my ophthalmology consultant didn't want to give me pilocarpine eye drops....instead his combined therapy daily meds include Ikervis ciclosporin drops which help LOADS

🍀🍀🍀🍀 coco

[Hidden]

I was offered this too by my rheum but was already starting Sildenafil (Viagra) for my Raynauds and she wanted me to raise dose of Mycophenolate to max as well so I declined - especially as I have Hypertension and it famously increases the BP.

Then helpline person on BSSA told me it's been brilliant for her and many others as long as it's taken before Sjögren's becomes too advanced (ie moisture production too depleted). I am contemplating trying it now though because my Sicca is so dreadful. Apparently it's well worth riding out the side effects because they usually settle down - but not sure I could bear to risk trying it.

[kinggus08]

Have you tried Exovac or the generic which is cevimeline? It might work better for you and have less side effects. I also use the Biotine dry mouth drops that are sold near the moutg washes and they work great. That might be something to consider. Good luck to you!

[ER66 in reply to kinggus08]

Thank you that. I'll certainly look into both options. I also use dry mouth gel, which only gives relief for a minute then gone. Also, I use the small pastilles which are good whilst they last....then back to dry mouth. It's so difficult when I'm in a job where I talk all day. Sugar free gum works the best but very unsightly when chewing in classes and trying to teach. 😕

Many thanks though. I'll check it out!

E x

[SjogiBear]

I also had problems taking the pilocarpine tablets and gave up after a few weeks of just feeling too awful. I've just started back giving it another try, however, this time I'm trying the pilocarpine eye drops taken orally: this way you can take a much lower dose and according to my rheumy, I may be able to build up my tolerance level over time. So far it's working well - I've not had any side effects although it's not noticeably increased saliva production yet either. It might be worth giving a go yourself though? (Taken this way it's off licence btw.)