Hi all , please can you help me , I have APS (diagnosed 3 years ago ) now I have a very dry mouth , I am pretty sure it's going to be Sjorgrens as I am very achey and tired too , waiting for a referral! I do know that these rotten Immune diseases seem to multiply with time , 7 years I'm told and that many bloods can come back negative and then boom , a positive !
Please can anyone tell me if this dry mouth thing is there the whole time or if it flares and what do you all use , I'm so thirsty all the time ( diabetes came back negative) it's driving me insane!
Many thanks
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Sevenstar
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HiI’ve been using a product called Xylimelts which are adhesive lozenges which promote saliva production. They work for about 4 hours and can be used overnight. Can be ordered online from: myoralcare.com.au/
In addition to saliva production off the shelf products, there are 2 well known prescription based saliva stimulating meds called Pilocarpine and cevimeline. Hope this helps.
Thank you Xanadux, yes it does , all info helps me , can I ask , is the feeling of thirst or just dry mouth and does it come and go , I'm new to all this and struggling with so many symptoms? Thx 🙏
It is really not possible to say how it will go for you and please don’t compare others with you as well. Your experience will be unique to yourself. Having said that generally speaking dry mouth may cause thirst but they are not the same thing. It can fluctuate, get better or worse but most of the time they are chronic symptoms. There are things you can do to control the flares however , diet is important , while there is no universal diet that works for everyone , you can consider cutting off gluten, sugar and dairy from your diet. Your mental health is also crucial as stress and anxiety can make your symptoms worse, yes it is easier said then done but you have to find ways to manage your stress, be it exercise , mediation and whatnot.
I would also check a drug that is made at compounded pharmacy called LDN, a naturopath can prescribe it for you which may help some of your symptoms. Hope you start finding some answers and relief soon
Arh I really appreciate you taking the time to reply , all info is very useful at the moment, it's really difficult when you don't know what to expect! I will check out the LDN .
Hi, I have had a dry mouth for many years caused by Sjogrens Syndrome. It was causing blisters on the inside of my mouth which was very painful. You need to keep the saliva flowing by chewing gum or or other things you enjoy. A great help to me is keeping my lips moist at all times, smearing them with vaseline or chap sticks. Do not let your lips dry out, I even have to moisturize them through the night. I keep a glass of water and a pot of vaseline by my bed which I use through the night. I find this helps. Keeping your lips moist should help the dry mouth.
For anyone with a dry mouth please be careful of medications such as antibiotics that can have a drying effect on already dry mouths and bodies. Ask your chemist if the medication you have been given by your doctor has a this affect.
I use biotene dry mouth moisturising mouthwash - 1 tablespoon three times a day after I brush my teeth. I also use gc paste on my teeth at night to protect them but it also helps with dryness.
I used to take pilocarpine, false saliva and xylimelts but have found with consistent use of biotene mouthwash and gc paste at night I don't need them. I drink water and also eat food high in water and healthy oils content too (romaine lettuce, courgettes, avocado, fish etc).
For my eyes I use thealoz duo gel at night and thealoz duo eye drops three times a day (I do it at the same time as I mouthwash).
On my lips I use Rituals Smooth Operator lip balm during the day and CO Bigelow 8 hour night balm at night.
Please can I ask you , does this flare or is this dry mouth permanently here , any good or bad days ? So far for me there is no respite , feel sad about this !
I'm at the severe end of the scale so probably not the best person to ask. For me it's permanent fish on dry land but I've learnt to live with it. I have water wherever I go and eat lots of water dense fruit and veg as a snack. I've changed my diet, I try to eat and exercise right and I use all the tools out there to make myself feel better. It is worse in a flare - my eyes in the morning on a flare are very hard to deal with as I can strain them if I open my eye too quickly. Thankfully I've not had that happen to me in a long time as I do the gel and the drops. Losing weight helps - I used to get v bad acne but now I've lost weight my pores don't clog as badly.
I'm in my mid 30s so I can relate to feeling sad about it, but I've found if I have all the tools in front of me, most days I don't feel bummed, I'm just living the best way I can.
But remember I'm up there at the bad end of the scale. For others it may well just be during flare ups.
Thank you for your reply , I'm sorry you are at the top end of this wretched thing, but it's good to know both for me and for you that are able to deal with it! Lots for me to learn ! Stay well!
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