I feel like this is common. I have already checked the database here and got some good suggestions. Side note, it doesn't seem like ppl take that step before posting. There is some great stuff already there. Give lovely Bev a break to init, wink!
Anyway, I get this at night, it wakes me. I have opposite in day. Don't think it's to do with an open gob at night. I get a parched feeling at the very back of my mouth almost throat area, wake up gasping. Water doesn't help, I have what I call bed sweets, gummy sweets that I shove in while half asleep. Not good for my teeth and could cause choking I guess. It most times results in me sneezing. Is it RA indued as I've read in database? Or am I getting throat cancer, help!
Any tips to combat it wold be ace!
D
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Deminem
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If it were the mouth rather than localised to the throat I'd wonder if you'd been assessed for 2ndary Sjogren's as it seems to be a fellow traveller for immune diseases such as RD? But if this only happens at night, it does seem like something sleep related or 'position in which you sleep' related (IYSWIM).
Have you been assessed for sleep apnoea - particularly if you wake gasping (if you mean for air rather than a drink)?
I tested negative for Sjogren's,but wake up thirsty all the time. I'm thirsty sometimes during the day. What kills me more is my dry eyes. We I wake up I swear I have sandpaper under my eyelids. I keep a bottle of simple saline drops for those moments when I wake at night. I plan to ask my rheumy's soon about it. I also never knew until recently, that RA patients like ourselves frequently have red eyes. I always have them. Hearing that is a common symptom made me feel better. I tried so many different facial products, soap, moisturizer, make up thinking I could find something that wouldn't irritate my eyes, but no go.
Best of luck to you with you dry mouth. Hugs, too.
I had never heard of Sjorgen's syndrome till now. It doesn't seem to fit as you say bcz I only have it at night. In the day I seem to have access silva! Trust me to be an anomaly!
Your post helped me. Believe it or not I hadn't thought of it in terms of a day/night thing, and this being a big clue. Though I don't think I sleep with my mouth open, there is something as you say happening when I'm in a laying position and unconscious.
Like A mine's due to pain relief meds. GP first prescribed Salivix which didn't work but Biotène gel does & a tube lasts a long time. I always have water in the car & beside my bed & as a last resort chewing gum in my bag.
Monkey looks good and healthy not like my tongue it's like a atlas it's called Geographica. It came with the dry mouth and mouth ulcers. It was put down to mtx but it still persists but not so bad since coming off mtx.
I take Nyastatin it helps with the soreness. I was also scanned for sjorns fortunately it was negative.Hope this helps .
Regards Mike
Not sure how you all get tested for Sjögren's but it can't be excluded just because of bloods or scan. Like RD it's a stand alone disease and 30-50% are seronegative. Secondary it can be diagnosed by Sicca alone but it can be an overlap disease that doesn't really show up in absence of saliva or tears. Mine didn't and I was rediagnosed with it as my primary disease last year having had it diagnosed very casually as a secondary. My lip biopsy was 100% positive despite my previous rheum doing the Schirmers and spit tests and all being normal range. My eyes and mouth used to be really dry and still are periodically. But to all appearances my mouth isn't bad and I'm nose breather at night - not great with a deviated septum but it has at least meant that my teeth are in really good nick after many years of mouth breathing making the dentist my second home when younger.
I too wake gagging and it's my throat where things start. Swallowing food and pills can be very hard now yet I can still feel a reasonable supply of saliva im front of my mouth. I know my mouth is always shut when I sleep because I have nose bleeds often from breathing through one nostril and I tend to clench my jaw so have TMJ. My Sjögren's has badly affected my peripheral and autonomic nervous system much more than my eyes and mouth
I know of people with Sjögren's disease who can only take food in liquid form and even some on feeding tubes when the disease becomes very advanced. The dryness usually affects the throat although many RD focused rheumies seem to be unaware of this - or the fact that the tear break up test used by opticians is much more effective than the Schirmers for detecting Sjögren's Sicca.
So you could well have secondary Sjögren's whatever the tests they are doing say. The lip biopsy is the only definitive diagnostic test if antibodies are negative.
They advise us to suck ice cubes - but this sets off my neuralgia horribly - I have Raynaud's too so ice is a no no! Xylemelts can be purchased online through Lupus UK online store I think and many find them life changing as they are designed to last all night. But I sleep so badly anyway that I just suck two salivex on roof of mouth, have water straw bottle to sip all the time and squirt of oralieve too.
Only time the front of my mouth was really visibly dry was when I was on Duloxetine and Amitriptyline - both of which are notorious for causing oral and eye dryness. As others here have said this is not Sjögren's. But throat and swallowing issues really can be - especially if you already have RD.
PS loved and related strongly to the title of this post!
I have this problem. I wake with a very dry mouth and sore eyes. I've mentioned this on a few occasions to rheumatology specialist but no acknowledged by them.
If I need to talk a lot which is not difficult to do my mouth and throat becomes dry and my voice becomes creaky and start to lose my voice.
My GP has given me eye drops for my eyes. But to help with dry mouth I try to drink water but this is difficult at work when I am with patients face to face I can't be seen drinking water in front of them so my voice starts to croak and I often get comments like 'do youhave a cold?'
My voice is same. Does yours start to fade as you become tired so that speaking at all becomes a huge effort? I think in my case it's coming from my voice box/ larynx more than my throat. Have you tried holding a salivex in just on your outer gum to a xylimelt - so they release slowly until you can have a sip of water?
I just ask because for me, the hoarseness seems to relate to the fatigue - which feels as if my whole body is falling into lock down, lie down and go to sleep mode wherever I am or what ever I'm doing. It starts early afternoon and my voice becomes very faded as if I've got laryngitis - start throat clearing and coughing and by evening I feel breathless and wheezy - hard to walk anywhere etc etc. I had it about a year ago but it's come back with a vengeance. Occasionally I have just had to lie down discretely as I can in a busy shopping street and sleep - totally embarrassing!
I even wondered if it's the RA side of things as this can make people hoarse as RA can go for the larynx I believe? I know that they assume it's dryness in my case but it's not - it's probably by autonomic nervous system failing because of the wretched fatigue.
My OH takes a tablespoon straight down on the daily.
We saw a TV program which had good evidence to show it dramatically lessens the chance of heart disease and also alzheimer's. You can have it on salad if you prefer, but it mustn't be cooked/heat up, has to be cold. I should partake, but seem to be dragging my feet a little on this one :/
I love Olive oil on food and salad but cook mainly with coconut oil. I was just meaning that sipping at night might line the mouth with a pleasant oiliness and stop the throat getting too dry?
I hear the Biotene mouth wash is a thick syrupy consistency(I haven't tried it yet)I wonder if olive oil would do as you say and coat the tongue as Biotene does, worth a shot maybe.
Fresh pineapple, blended or chopped, is excellent for sore mouths & dryness. It stimulates saliva production & contains ananase which soothes. We used it in patients that had chemo. I used to blend fresh with ice (lovely with ice cream!!!)
Water in itself isn't really enough - it gives temporary relief but doesn't do the same thing as saliva.
There are a number of products for dry mouth out there, so its a case of trial and error to find what works well for you individually.
you might want to give Oralieve products a try - you can get a free sample by going to their website oralieve.co.uk - worth a try?
There was a recent post on Lupus UK HU about this problem and Oralive came off well. If Sjogren's is responsible then this post confirmed it's the quality rather than quantity of saliva that counts. Sipping water all the time washes away the healthy bacteria found in saliva - which is why so many of us wake up gagging with dryness in our throat (or needing a pee from all the water consumed during day!)
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