pilocarpine (salagen) experiences anyone?

hello all

today rheumatology have suggested we consider a trial of pilocarpine (brand name salagen)

for ana neg sjogrens, with relatively low IgA

would be very glad to hear about others' experiences of pilocarpine

Approx 6 months ago there was one post briefly discussing pilocarpine here...perhaps someone has more to tell me now....

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8 Replies

  • Hi barnclown. The dental hospital I'm under tried me on pilocarpine a year or so ago as I have sjogrens, and sadly it didn't suit me. I was very upset as the pill worked well in producing saliva, I was so pleased. Within a few days I felt out of sorts, like I was fading away and when I saw the dental surgeon again she took me off them straight away. To make matters worse she said there was nothing else they could give me...consequently I buy and chew endless amounts of gum and sugar free mints along with the toothpaste and mouthwash prescriptions they gave me. Very disappointed. Wish I could give you better news but that's my story on pilocarpine

  • your reply is perfectly timed because v soon am having my first consultation with a periodontist who has received referrals from my rheumatology clinic.

    i'm so sorry pilocarpine gave you good effects but brought about that 'fading away' too (excellent description: i think i totally 'get' what you mean...)

    i've posted my ? on a sjogrens forum, where i've had a reply indicating there can be problems.

    my instinct is that i should give pilocarpine a trial, but that the result will not be straight forward. yesterday he said that these choices are largely about balance of risk. 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 neuro cerebral symptoms so profoundly damped down that i simply no longer feel as if i have faded away completely all of the time)

    it's like living with a series of tough calls, this life of lupus, sjogrens etc

    many thanks for your reply...am very grateful

    wishing you all the best

  • I certainly think you should give it a try :)

  • thanks so much :)

  • Hello Barnclown

    I was put on Salagen (pilocarpine) when I was first diagnosed with primary Sjogrens (ANA & Ro +) and tried it for a few weeks. It certainly really helped me to have more saliva but the side effects were just not worth it for me. I felt much more unwell than usual as if I'd got a mild dose of the flu. It was a horrible feeling which stopped as soon as I discontinued the Salagen. Obviously everyone is different and it might be worth you giving it a go as you can just stop it if you don't tolerate it well. My rheumy said that it's something that we can use just 'as and when' if we need to have more saliva for a special reason (I've never used it again personally but then I do have a small amount of saliva left so I can get by).

  • this makes a lot of sense to me: am v grateful sjogibear! i can especially relate to having a small amount of saliva - enough to be able to get by! many thanks

  • I have been taking Pilocarpine for some months now and you certainly get more saliva but I get cold sweats with it sometimes and my clothes get quite wet, I have found eating a decent meal helps to stop this. Sometimes It makes me feel a bit yuk in the stomach, but I will persevere. I am taking Domperidon aswell, so they both help to get the food to go down. Hope this helps you.

  • Thanks v much. Plenty of food for thought. Just what I need!

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