Extremely dry mouth : Hello all So I've had my... - NRAS

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Extremely dry mouth

Brychni profile image
12 Replies

Hello all

So I've had my appointment and been told it's most likely PsA. Back on hydroxychloroquine and etoricoxab ? a strong NSAID and had a steroid injection in my shoulder by the consultant which took a while to take effect and has now worn off.

I'm also on my top dose of Topiramate for migraines/cluster headaches so my brain has turned to mush. On top of everything else I have an iron deficiency and there's something wrong with my haemoglobin.

For a while I've also had a really really dry mouth. It was so bad a few months ago that it was painful to swallow and I made an emergency GP appointment. He said it was an auto immune 'thing '. Wtf??? Anyway ,for a while I thought it was thirst and another GP tested for diabetes but was ok. As it's got worse though I realise it's not thirst it's dryness. Chewing gum helps but what can I do about it at night?

Anyone else get this,? I get a lot of pain in front of my ear and under the back of my tongue and under my chin at the back near my neck (had this for years) sometimes it also makes my throat feel sore on that side and even deep inside my ear.

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Brychni profile image
Brychni
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12 Replies
Boxerlady profile image
Boxerlady

I was told by my dentist that I was producing less saliva (he could tell because my teeth and gums weren't as clean as usual) and he said that it was common with RD. He advised me to up my cleaning regime (which has worked 😊) and to try sucking sugar-free sweets - Polos are my favourite - to keep producing as much saliva as possible.I have a drink beside the bed and have a sip every time I wake up - which is every couple of hours thanks to night sweats - and that seems to help.

So can relate . Yes it can be linked with AI disease. I get dry eyes and nostrils and was diagnosed with SICCA. With dry mouth you can be prone to oral thrush especially if on steroids. My comes in flares . Ice lollies or ice cream helps mine ( great excuse 😉) night time is harder I’ve found Xylimelts help. They stick to the inside of your cheeks and stimulates silva while you sleep. Get them on Amazon . X

Ps. Dental care is a must. Even though I’m meticulous I still got gum disease and have had to have root canals 😩

Brychni profile image
Brychni in reply to

Ordered some yesterday! Thanks

Brychni profile image
Brychni in reply to

It makes sense as I have had a lot of teeth removed over the past few years. All at the top at the back. I just thought it was because they had been filled a lot when I was a child but I have always looked after them as an adult and am not sweet toothed. The dry mouth thing has been creeping up for a few years but it's been coming slowly so I have dismissed it and my habit of chewing gum all the time. But it's so bad now that I can't go any where without a bottle of water and am reaching for gum as soon as I get out of bed.

in reply to Brychni

The same pattern for me . It creeped up on me never went anywhere without a bottle of water . I would see your Gp and let your dentist know.x

Well thats brilliant you've had a diagnosis (finally !), hopefully the medicine will start working for you and you can get some relief.

I know with PsA you can get alot of enthesis and this might be some of your symptoms?

The mouth problem i haven't had myself but there's some good advice above, hope it helps x

medway-lady profile image
medway-lady

I used to get this with LEF and its a well known side effect ask your GP for the oral spray and avoid chewing gum and sweets. It's called Glandosane and it also available OTC and may be cheaper that way than on 'script. I used to like the lemon flavour, it won't decay your teeth and can be used in the night too. The effect lasts a while too.

Brychni profile image
Brychni in reply to medway-lady

Thank you, I am going to Boots later to ask about his.

allanah profile image
allanah

Yes I have secondary sjogrens disease which is an autoimmune reaction. Mine is to drugs and RA.but I get mouth gel from the gp and flourish toothpaste from the dentist on prescription. Also the joint at your jaw can get inflamed the same as your other joints, so your dentist can make you a plate thing to put in overnight to help. I did refuse mine !!

Lizard28 profile image
Lizard28

Try Salivix pastilles, I get them on prescription but you can also buy them on Amazon or probably chemist. I used to wake up choking at night, water only helps for a second but I used to stick one of these pastilles to top of my mouth and it let me go back to sleep. (Havnt choked yet) also get toothpaste from dentist on prescription, it’s not a cure but helps control it.

Brychni profile image
Brychni

I've had the choking thing in the past, I thought it was reflux.

barbieg profile image
barbieg

I have dry mouth and eyes. I have tried the throat sprays but neither worked for me. The Salivix pastilles worked well though. I do the same as Lizard 28 and stick it to the front of my mouth and hopefully go back to sleep if I’m lucky. I’ve never choked either. I found the sprays were a nuisance because you have to put the light on to make sure your aiming it down your throat. Otherwise it goes everywhere! That really wakes me up as I don’t sleep well and wake up every couple of hours anyway. I get mine on prescription.

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