Dry mouth: Hi, do any of you suffer with... - Vasculitis UK

Vasculitis UK

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Dry mouth


Hi, do any of you suffer with extremely dry mouth, to the extent that your tongue sticks to the side of your mouth or the roof of your mouth , 😥

12 Replies

There are two possibilities: Sjoegrens syndrome which is an autoimmune condition in its own right complete with antibodies and a lot of other potential symptoms or sicca syndrome which has the same symptoms of dryness in various areas but no antibodies. Sicca is very common alongside other autoimmune conditions including forms of vascilitis. And once you have one a/i disorder others do love to come along and join in the game.

There are medications that improve Sjoegrens but mostly it is symptom management, There are pastilles to improve mouth dryness and you really need to speak to a dentist as dry mouth can lead to dental problems and, eventually, losing teeth.

ryjaro in reply to PMRpro

I have dry mouth through the night , day time is okay in fact I have more saliva than I need . I am on 15 mg of Methotrexate have been for 5 years now.

PMRpro in reply to ryjaro

Are you tending to mouth breathe at night - since it sounds as if it isn't sicca syndrome?

ryjaro in reply to PMRpro


I have a very dry mouth such that in the middle of the night I’m like someone coming in from the desert!! Gasping. I always put I down to Amitriptyline which I take at night for the neuropathic pain I get from EM secondary to the Vasculitis. Interesting to know that it also comes from the Vasculitis itself. Cheers now

ryjaro in reply to 2534

Hi I am not sure it does as I have come off my Amitriptyline and it is proving a lot . Thank you for caring


I suffer from Primary Sjogrens Syndrome, and suspect that I had this for decades before it was eventually and correctly diagnosed. Yes, extremely dry mouth, not producing adequate saliva.

Unfortunately, there is only symptomatic relief treatments. I live in UK, and am prescribed Biotene oral gel (it's in a tube like toothpaste), but I've paid the price for years of non-diagnosis with having tooth decay and tooth loss despite regular dental care.

However, do you also suffer from dry eyes? If so, then insist upon being seen by a Rheumatologist who knows about SS, and insist upon being referred to a specialist Eye Hospital - if you don't produce sufficient tears then your eyes (corneas to be specific) are at risk of ulceration and ultimately suffering irreparable vision loss. I require 4 types of eye drops and ointments to supply sufficient lubrication to my eyes. Be careful!

Best wishes and good luck.

ryjaro in reply to zeddy54

Thank you for your response ,I am speaking to my specialist tomorrow and will see what he says about it,it just seems to be getting worse. I also have the gel and mouth spray but not easy to put mouth gel on too many times in the night,plus I find it a bit sickly and sticky.I am based in Coventry and feel I have a good specialist.

zeddy54 in reply to ryjaro

Hi. Thanks for replying. Hope everything went well today with your specialist, and you managed to have all your queries answered.Best wishes

Yep..I do especially at night. You can get some stuff to help especially at night called Xylimelts..they stick to your gums at night and keep your mouth moist. Dry mouth leads to dental issues so give them a go. For me is a side effect of mycophenolate

ryjaro in reply to EGPAGuy

Spoke to my specialist, he thinks it's my amitriptyline , so he has stopped them as they weren't helping me with my sleep, so I will see how I go. But thank you for the help x

Karenjaninaz in reply to ryjaro

I find my mouth opens like a trap door while I sleep or nap. Then the dryness wakes me up. Now I tape it shut at night. There are tapes for this on Amazon. Before this I was recommended Biotene products to which I developed an allergy and didn’t help anyway.

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