Dry mouth

[joannebond360]

Hi everyone. I have suffered with dry mouth, nose and eyes on and off with lupus. It’s particularly bad at the moment.

Which products does everyone use for the dry mouth? I’m waking up in the morning with no saliva atall.

Thank you

[Hidden]

I have Sjögren's and use Hyloforte eye drops, artelac eye gel, biotene mouth gel and salivex pastels all keep me functioning just about - usually wake 3 times a night for dry mouth and throat so a squirt of biotene gel and a salivex to suck help get me through. If eyes are extra awful I use lacrilube and Vaseline inside my nostrils. I'm advised that Pilocarpine can really help if it's Sjögren's that's causing your problems. Amitriptyline and Duloxetine both caused my Sicca to become unbearable.

[Mandypandy1969]

I have a really dry mouth all the time and have had for years. the doc gave me biotene gel years ago but no good. no matter how much I drink or chew gum, my mouth and throat still dry. I am in a lot of meds. don't know if that has anything to do with it. it's just horrible all the time. I was thinking of going back to my g.p. I also grind my teeth and when I wake up they are clenched so tight. drives me mad along with everything else, tinnitus, noise sensitivity, fluorescent light and car headlights sensitivity.

[joannebond360]

It’s absolutely horrible isn’t it? I wake up all night with my mouth and lips bone dry. My mouth and throat is so uncomfortable, I hate it! Food and drink doesn’t taste the same, all my tablets get stuck in my throat 😩

Have ordered some bits just now to try, mouth washes and pastels etc.

I’ve always had it on and off but recently it has been real bad!

Thank you for your replies

Jo x

[Mandypandy1969 in reply to joannebond360]

yeah mine has got worse since i started the hydroxy. nasty tasting tablet aswell, doesn't matter how quick you try and swallow it, you still get a nasty taste. makes me gag. xx

[joannebond360 in reply to Mandypandy1969]

It’s so horrible isn’t it?

Even food and drink is tasting funny at the moment 😢 xx

[Hidden]

Could be secondary Sjögren's for both of you perhaps? Well worth speaking to your rheumatology team about and also having regular dentist and optician checks. Many with Sjögren's are on Hydroxy so it shouldn't make things worse with dryness. Antidepressants used often for nerve pain or Fibromyalgia are the main culprits if it's not Sjögren's. There is no cure for Sjögren's and the mouth/ throat is often the least possible to treat. Some swear by Xylemelts which can be ordered online - maybe through Lupus UK shop? Others say sucking ice cubes or having icy water to sip during the night.

Nothing really helps me I admit but the front of my mouth is perfectly moist. It's my throat and the neuropathy plus horrible taste that are the most bothersome - and swallowing large pills requires gallons of water and lots of bravado!

[MelOctober in reply to Hidden]

Hi folks,

Ok I have same issues and nose I use Afrin spray

Only when needed clears up my stuffiness

Rheumy gave me cevelemine 3x daily for dry mouth, I believe it really helps.

Can't remember the milligrams but it's used in treatment of sjogrens

I was newly diagnosed this past year with lupus and yes it just sucks

For lack of better word.

Goodnight for now from USA Texas 😊

Melody

[joannebond360]

I have spells of it being worse. Hospital did mention it could be that too but haven’t really followed anything up.

Like you it’s the back of my mouth and throat and my nose and sinus’s.

I have ordered some of those to try so will see if they help, don’t hold out much hope.

Xxx

[Buffy14]

I do get it a bit and seem to have flares my eyes being the worst my rheumatologist said I may have a bit of sjogens which can happen with lupus .

[chrisj]

I have primary sjogrens and use a mouthwash and toothpaste on prescription, BioXtra and Difflam. I bought Boots Expert mouthwash recently and found that lasted longer than others that I've tried, but nothing really keeps my mouth moist for very long. I buy sugar free mints, fruit sweets and chewing gum. I find fruit squashes help, in fact most drinks except water. Have to drink with dry food like bread or it wont go down so I keep lots of fluids in the house

I'm waiting for an appointment at the dental hospital, going to see if they will prescribe something more. They tried me on pilocarpine but it made me ill, then discharged me some time later but after an open sore in my gums flared up my gp has referred me back there...Hope thats useful xx

[Mandypandy1969 in reply to chrisj]

I can relate to this and it's awful. smoking, like I do doesn't help and i know that but don't want to and can't stop. x

[Mandypandy1969 in reply to chrisj]

I also grind my teeth and when I wake up in the morning, my teeth are so tightly clenched which must also contribute.

[misty14]

Hi jo

Sorry to read of your dry mouth , nose and eyes problem. I've had a dry mouth for years and buy Biotene toothpaste as its been the best for me. It's expensive but has flouride and is an anti bacterial and it's given me back some saliva which is so important for mouth health!. My gums are also a healthy colour too. You can buy it in Boots for £4!.

I hope you find relief soon as its horrible not tasting food etc. X

[joannebond360]

Thank you everyone did your replies. Going to try the products that you have suggested to see if they help.

Jo

[Lturner12 in reply to joannebond360]

New here and late to this thread. But I️ have lupus and Sjogren’s and evoxac is a lifesaver for dryness. Ask your doctor! Works way better than pilocarpine IMO.

Hope you’ve already found some relief!

[joannebond360 in reply to Lturner12]

Thank you, will try that!

[Mandypandy1969 in reply to Lturner12]

Thank you, I will find out about this. I don't seem to be getting much bloody help at all listening to people's comments on this site. X

[Chanpreet_Walia LUPUS UK]

Hi Joannebond360,

The Lupus Encyclopedia provides general measures to help alleviate dryness of the mouth:

•Drink plenty of fluids, especially water, throughout the day

•Avoid dehydrating fluids such as alcohol and caffeine

•Avoid smoking

•Use gum and mints that contain xylitol throughout the day

•Eat soft, moist food if you have trouble swallowing

We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope you will find helpful: lupusuk.org.uk/wp-content/u...