Sjogrens - Pilocarpine for dry mouth

Posted , 13 users are following.

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.

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  • Posted

    Hi Tracy,

    I do & yes you really should take it... I unfortunately started way late in taking Pilocarpine & my gums have receded so badly in the bottom front portion of my mouth that the roots are exposed & my teeth wiggle... also if you haven’t as of yet, go to an optometrist & get eye lubricants, you may also need nasal sprays & ear drops... Sjogrens is a very drying disease.... take care of yourself now, even if you haven’t developed severe dryness as of yet. I know from experience.... take care.

    • Posted

      HI Brenwag68 - thank you so much for the advice. I appreciate it and will try it.

      I'm sorry to hear about your teeth - I can tell dry mouth has affected mine and hoping to try to slow down the impact.

      Take good care. 

       

    • Posted

      I use evoxac because I can't use anything else for dry mouth/eyes. By all means use one of the Rx meds for dry mouth if you possibly can. I was diagnosed almost 30 years ago, have been in evoxac for 15-18 years & my dentist just said that my mouth doesn't show evidence of long-term dryness.

      There may be an adjustment period. For evoxac, I think a doc only knows what they're doing when they start people on a single 30mg daily. Just my opinion.

      I hope you find something that helps.

    • Posted

      Thank you, aitarg. Appreciate it. And it’s great to hear that it helps! 

      Question for you. Have you experienced extreme fatigue? If so, how have you managed it? I’ve been considering plaquinil but have resisted because of potential side effects. 

    • Posted

      Hi aitarg35939, I am a new for this disease . I am wondering that

      you have been diagnosed Sjogren's for 30 year, that is long time, how you manage the disease and which part of body been involved? Or just eye , nose and mouth dryness? You take the meds does any side effects? I have got badly of dryness of eyes, nose , Throat. Any share of your will be very apprciate.

      Xiao

    • Posted

      I was also newly diagnosed with SS. I lost sense of taste and smell, silent acid reflex, dry mouth and mild dry eye.

      I tried Biotene  spray and  XyliMelts for dry mouth. My main complain right now is very bad acid reflex with post nasal drips which i think it is related to SS. My doctor gave me Evoxac, I haven't not started, wait to talk to a GI doctor about reflux this week. I think i will have to take both Evoxac for dry mouth and PPI for slient acid reflux. 

      Linda

    • Posted

      I wish I had a suggestion on fatigue. I don't and have missed a lot of things due to lack of energy but only really in the last 5 or 6 years.

      I was supposed to talk to rheumo last week about plaquenil. Had to cancel so we'll talk about it later. We do not all get side effects from any med any more than we all get all of the SS symptoms.

    • Posted

      I have other major health issues than just SS so I learned a long time ago that for me to concentrate on health problems just made things worse. I do what I can to help myself and I refuse to sit around and worry past that. Yes, all my mucus membranes are very dry. I use my evoxac and 2 kinds of eye drops & I now use eye gel right before I go to sleep. I take care of my mouth and I drink 48-80 oz of water daily, in addition to anything else I might drink. My water is filtered thru a 5 stage system which removes a lot of drying chemicals present in my local water, to such an extent that I notice a big difference in how my mouth feels after 10 oz of water somewhere else.

      Yes, SS definitely killed my gallbladder. Is it part of other organ problems I have? I don't know. More importantly, the docs can't say definitively. If they don't know, I consider myself to be blessed in having a temperament that accepts or tolerates ambiguity. It has been and will continue to be my sanity.

    • Posted

      Hi Airtag - I've missed a lot of functions too from fatigue. I realized that I tend to correlate any health issue to SS. Maybe I should try to avoid doing that but tend to think the dryness causes other issues.

      One thing I'm going to focus on is my diet -- which is good overall but it gives me a sense of having some kind of control.

      Let me know how plaquenil works for you if you do go on it.

      Thanks for responding. Take care. 

    • Posted

      Hi Tracy I have been on 200mg twice daily since Jun2017 and I only decided to take it as my joints started to progressively get worse from shoulders to knuckles to ankles over 6 months and i was in agony and took strong painkillers 3x daily and woke up during the right in tremendous pain when the meds had worn off. Plaquenil has restored my quality of life .I know I have to see ophthalmologist every 6 months because of potential side effects (I was diagnosed with SS in summer 2015 and stopped plaqenile after 3 months coz the knuckles went back to normal...at that time only knuckles were affected as well as dry eyes and mouth. Now I also have punctal plugs in eyes  have to use lubricant eye drop at least 2x daily.)

      ​So for me it has been worth the risk.  

  • Posted

    I have been diagnosed with ss now for 24 years for the first two years I had no Silvia at all. I drank so much water I thought I was going to drown my kidneys I got it at the age of 31 and now I am 55 I had no Internet back then and really had no idea what this disease was all about. I never have taken medication at all and today I do have a good amount of siliva in my mouth . Most of the time My teeth are good. But I have had a few out but for me I believe and mostly from what I have researched and trust me i have done maney years of that ..that in the long run if you take medication it makes your ss worse in the long run Now not everyone will fit in your that catorgory but most will. Although I do have recurring bouts of phumonia and one bout nearly killed me 4 years ago I was on life support for 11 days and as I write this I have another bout right now . I think you being new my advice is to try natural things first. But this is only my opinion here
    • Posted

      Hi Christine I have had SS 32 years and mostly dry eyes, mouth, nose. I do not take meds as didn't like the side effects and manage everything with local drops etc. You are the 1st person I have heard with SS and pneumonia. I have had 4 bouts - none quite as dramatic as yours, but 2 bouts within 7 months was a bit much. I am still looking for the link with SS and will get further results this week. What have you learned about any SS link? Thanks, Jenny

       

    • Posted

      Hi Christine. 

      I’m so sorry you have pneumonia again. Do you know what causes it? Is it the dryness?

      I agree with you to always try the natural path first. I guess I’m frustrated that I keep having bouts with “walking”pneumonia or bronchial issues. 

      So my thought is that if my dryness is causing theses issues to try saliva inducing meds to see if it helps. 

      Thank you for responding. I appreciate it. And take good care. 

    • Posted

      Hi Jenny. It’s good to know that you haven’t taken any meds and have managed SS. 

      Would you please let me know what you learn about SS and your pneumonia? And I will share what I learn. My thought is that the  dryness causes it but I don’t know. 

      I’m on a similar  journey as bronchial issues and  pneumonia Seem to be a  common theme now. It crops up when I’m experiencing more than the usual dryness. 

      Thank you and take good care. Tracy. 

       

    • Posted

      How interesting about the pneumonia--I also had an episode of walking pneumonia in my early thirties and couldn't shake it.  Took about three months to finally get better (this was before I had been diagnosed).  I have had some terrible coughs--and I feel like the SS could be related since it is necessary to get the mucous out of the lungs, which can only happen if it's wet.  On another note,  I agree with others who suggest taking a natural route to healing--there are no negative side effects.  Changing my life style (diet, stress, chemicals removed, exercise, meditation)  definitely helped my fatigue, RA, and acid reflux, dry eyes, etc.  I used to get sick often and suffer from cankers which I haven't had for years now.  And my colds have been minor.  I used to be a skeptic, but I say try it--even if just for 3 months--give it 100% and see if you see any improvements.  Find a naturopath--they can be so helpful.

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