Help for dry mouth!

[RS0309]

Any helpful tips for dry mouth? My mouth is excessively dry at night especially and disturbs my sleep often. What can I do to reduce this? TIA for any tips!

[Chanpreet_Walia LUPUS UK]

Hi RS0309,

Have you spoken to your doctor about this?

According to The Lupus Encyclopedia, Sjögren’s syndrome “affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth. Dryness of the ears can also be a symptom of Sjögren’s syndrome. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which you can read here: lupusuk.org.uk/wp-content/u...

We published a blog article with tips and information on how to cope with dry mouth which you can read at lupusuk.org.uk/dry-eyes-and....

Best wishes,

Chanpreet 💜

[RS0309 in reply to Chanpreet_Walia]

Yes I have secondary Sjogrens. But he didn’t give anything to provide some relief. Will read the links above. Thankyou so much.

[Chanpreet_Walia LUPUS UK in reply to RS0309]

You're welcome.

Also, we are hosting a live virtual seminar about lupus and Sjogren's syndrome on Wednesday, 30th June at 6 pm (BST), the seminar is free to attend. Register for the event at lupusuk-virtual.org.uk/home

[Hidden in reply to RS0309]

Just to say that I’ve found Oralieve gel (I get it on prescription) to be the best. Some swear by xylimelts and my oral medicine dr says her Sjögren’s patients report they are brilliant but she can’t prescribe them on NHS. I bought some online once but they were too big for my shrinking mouth and I didn’t like them so just use salivex pastels now. May try again though as this was years ago.

xylimelts.co.uk/

Regarding “secondary” Sjögren’s - there’s no such thing now this distinction has been got rid of by EULAR and ACR - it’s always a full blown disease in its own right whether lupus or others overlap it or not. If you have both lupus and Sjögren’s then it’s called Overlap CTD.

academic.oup.com/rheumatolo...

[RS0309 in reply to Hidden]

Oh ok - don’t know why my doctor referred to it as secondary Sjogrens then. Will read up more about both the gel and xylimelts too. Thanks a lot!

[Hidden in reply to RS0309]

Probably because they are well behind the times on Sjögren’s still. Most are. If you read the link you’ll see that even the last president of the BSR says this so it’s not me being controversial 🙄😉

[Hidden in reply to Chanpreet_Walia]

I have the same and was prescribed a saline mouth spray. I've not used it long enough to see if it helps. Doesn’t taste too great though.

[PMRpro]

I was goingto say I know several people who find Xylimelts brilliant:

xylimelts.co.uk/

They work well and don't slip around your mouth

[RS0309 in reply to PMRpro]

Great! Thanks… helps when recommendations are backed up by others too 😃

[weathervane]

I have had good results with biotene gel at night, always keep a glass of water beside me as well .

[RS0309 in reply to weathervane]

I can’t be anywhere, day or night, without water now. Have a bottle with me constantly! Thanks for the name of the gel 👍🏼

[Lizard28]

I used to find sticking a salivax pastel to the top of my mouth when I wakened and was choking with lack of saliva. They are my little saviours

[RS0309 in reply to Lizard28]

Interesting! Thanks.. will take a look!

[Bowenlady in reply to Lizard28]

I use those too, little gems of things, always got a box with me. I find that when I wear a face mask the dry mouth gets worse so always pop one of those in as I put the mask on.

[Bowenlady in reply to Bowenlady]

And the are on prescription

[Ingrid1234]

Your GP should prescribe you Biotene moisturizing mouth gel which gives relief and is long lasting.👏👍

GP should know about this product.

Popular in the UK and available in most pharmacies.

[noonoo57]

Hi RS0309, bit late reading your post.Biotene toothpaste, Biotene mouth wash.

morning, lunchtime and before bed and you can do it 4 times a day.

If I don't do it before bedtime (usually because I am waking up from sleeping in front of the TV) I wake in the night and the inside of my mouth is stuck to my gums. Also find I need more water. It has become more of an issue than I thought it would. I am seeing a professor at my local Eye department next month with reference to severe dry eye.

I would suggest you try these first and if they don't work then get advice from the professionals. Hope it helps as unfortunately we are stuck with it and you need to try everything to get relief. It may not help all sufferers but its helps me. Take care and tell us how you get on.

[Cas70]

Xylimelts - Amazon or mouthulcershop.com - pop the lozenge on gum or tooth and it keeps mouth moist. Use two if you need to. Pillow looks messy but washes out. Saved my sanity !,

[Beckys]

Sour candy will make your mouth salivate more, I have Lupus plus Sjogren’s & 20 or more other things, but Sjogren’s make your mouth very very dry plus many other things, I also keep a glass of water by my bed, they also sell lots of products for dry mouth, hole this helps