I am sorry if there is another thread with similar questions, but I have not found one. Upon my request, my rhumy has prescribed Pilocarpine (I'm in France where it does not exist so they have to mix it up) because as a teacher, my mouth dryness is a real handicap. I have constant soreness, ulcers, irritated gums, dry throat etc and need to find something that helps or I'll go crazy; I have the pot of tablets at home but am scared to take them as I live alone and am worried about the effects on my heart rate, sweating etc.. How bad are they? Does anyone manage well on these with relatively little side effects or are they par for the course because of the way the drug works? I'd really appreciate some feedback from people that have tried / are on this drug. Also, do you have to take them every day or can you come off them when the dryness is not too bad? Many thanks.
After lots of different experiments with dry mouth, I have that BIOTENE ORAL GEL works very well for me. It's available over the counter (no script needed) and doesn't appear to have any side effects. So far I have avoided taking any drugs (other than Effexor) to counteract my Sjogrens even though I was diagnosed in 1994.
Pessoalmente, eu evitaria a pilocarpina devido aos efeitos colaterais, mas você também pode usar um spray oral que funciona muito bem, e o gel recomendado também é bom. A água não ajuda muito, mas mantém seu corpo inteiro hidratado, então beba 2 litros se puder. Você já tentou eliminar o glúten? Ajuda muito em muitas condições autoimunes e vale a pena tentar.
Thanks for your replies. I have thought long and hard about going on meds but I will not manage if I stay like this indefinitely. I have no idea how bad it's going to be from one day to the next. I find the sprays and gels absolutely useless. The best for me is the biotene mouthwash which last around 2 minutes.... I cannot have stuff in my mouth when I am in class even though I do now chew gum in class but am learning how to manage it. Talking all day for a job with the air and the movement is highly irritating for a dry mouth. I would be interested to hear from anyone who is on Salagen/ Pilocarpine.
Hello! I take pilocarpine for dry mouth related to Sjogren's. I was also worried that I might get heart palpitations or a strange feeling. But, actually I have not had any of those side effects. It works pretty well. And I don't take the meds all the time, just when I feel I need it because the pills aren't long acting in your system. I think it is a reasonable option to try! Good luck!
Vale a pena tentar. Eu tentei por 4 meses, mas não gostei dos suores que comecei a ter à medida que a dose aumentava. Para mim, o benefício não compensava esse desconforto. Mas para você, pode ser diferente, então é melhor descobrir caso ache que realmente ajuda. Tenho sintomas semelhantes aos seus, mas como não uso a voz o dia todo no meu trabalho, aguento um pouco melhor. A melhor ajuda que encontrei quando preciso falar é sempre ter uma pastilha sem açúcar na boca. Ela faz maravilhas e nunca saio de casa sem acesso fácil a elas.
Thanks for your reply. Don't the sugar-free mints end up irritating your stomach? I suck constantly on SF sweets or gum but find that the sorbitol/malitol etc. really upset my stomach and heve me running to the loo (also not very convenient as a teacher ).
Thanks Gretchen - so these actually work pretty quickly, if they work then? Some comments I have read seem to say that you have to take it for 2 or 3 months before being sure f it works. When you say it works pretty well - for how long does the relief last? How quickly does it kick in? Are there no side effects for you? Thanks
I take 5mg at a time. My dosage says 3 times per day. When I take it, it does work pretty quickly for me. Basically, it feels like when you are really hungry and your mouth salivates. It's not extreme (you won't drool!) but I think it makes a difference. Mind you, I do not have a horribly dry mouth most of the time so I take it when I need it. When I need it, usually just twice a day. I feel like it wears off in a few hours but I haven't researched that to be sure. Otherwise I've had no side effects. I suppose if I took an increased dose that might make me feel jittery, etc but like I said I literally have had no side effects. I hope it works for you. Maybe lay off coffee the first time you take it just in case!