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Newbie - medication advice please (Pilocarpine/Salagen)

Posted , 8 users are following.

Kablois
Kablois

Hello all,

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.

1 like, 9 replies

9 Replies

  • zeet
    zeet Kablois

    Posted

    Hi Kablois

    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. 

    I hope this helps.

  • Sue1247
    Sue1247 Kablois

    Posted

    Personally I'd avoid Pilocarpine due to the side effects but you can also get an oral spray that works very well and the gel recommended is good too.  Water doesn't help much but will keep your whole body hydrated so drink 2 litres if you can.  Have you tried giving up gluten?  It helps a lot of auto immune conditions and worth a try.  

    • Kablois
      Kablois Sue1247

      Posted

      Gave up gluten 7 months ago. It helps my stomach but not my Sjogren's

  • Kablois
    Kablois

    Posted

    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.

    • gretchen37301
      gretchen37301 Kablois

      Posted

      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!

    • Kablois
      Kablois gretchen37301

      Posted

      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
    • gretchen37301
      gretchen37301 Kablois

      Posted

      Hi Kablois,

      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!

  • jennifer09136
    jennifer09136 Kablois

    Posted

    It is worth a trial. I tried for 4 months but did not like the sweats i was geting as the dose increased. For me the benefit did not outweigh that discomfort. But in you it might so better to find out in case you find it really helps. I have similar symptoms to you but as i do not use my voice all day for my career I put up with it a bit. The very best help though i have found for when i do need to talk is to ALWAYS have a sugar-free mint in my mouth. It does absolute wonders and i never go anywhere withoit easy access to them.
    • Kablois
      Kablois jennifer09136

      Posted

      Hi Jennifer,

      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 sad).

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