1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Sjogrens - Pilocarpine for dry mouth

Posted , 13 users are following.

tracy79802
tracy79802

Hi - I've had Sjogrens for the last two years, and like many, I have extremely dry mouth and asked my doctor to prescribe something and he prescribed Pilocarpine. I haven't started taking it yet as I was hoping to hear from folks who have. My hope is to minimize the longer term effects of dry mouth.

Has anyone taken it and does it help?

Please let me know.

0 likes, 21 replies

21 Replies

Prev
  • amkoffee
    amkoffee tracy79802

    Posted

    It made me very nauseous so I only took it for about a week. Then my rheumatologist prescribe cevimeline 30 mg 3 times per day. I fill this prescription now and then but I don't take it all the time because my copay is $100 a month.

    • chris08587
      chris08587 amkoffee

      Posted

      I too, felt very sick when I took it. I asked this question about this drug months ago and feel confused why I never got all the responses that have now been given. Makes me feel sad. 
    • aitarg35939
      aitarg35939 chris08587

      Posted

      Chris, we don't all see all the posts. We're just like you, folks with other things in our lives that may keep us from being glued to this website.

      If you get no replies on something, try reposting after a week or 2. Quite often in 2 other forums I find that the tag line is the culprit. If the real issue/question isn't in the 1st few words of that subject line we may not get attention from the folks who can answer that issue, assuming that they happen to be online within days of when you post something.

    • chris08587
      chris08587 aitarg35939

      Posted

      Thank you for your very cogent response. I am not “glued”. Just sick. Thanks for your attention to my question.
    • amkoffee
      amkoffee chris08587

      Posted

      Don't be sad Chris I don't know why you didn't get very many responses but at least you're learning something through this thread. I will tell you that the Evangeline works fairly good but not great. I still sip water all day. And my copay for it $100 a month so there are months when I just don't take it because I can't afford it. Well for that matter my rheumatologist wants me on Humira for treatment of Ra but I can't afford that because my copay is $850 a month. And my income is too high to get help.

  • irene47920
    irene47920 tracy79802

    Posted

    I have never taken this but suffer terribly from a dry mouth and swallowing. All my food has to be more or less liquefied.. Not to mention teeth problems.
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.