DRY MOUTH/ HORRIBLE TASTE: Hi Everyone... - LUPUS UK

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DRY MOUTH/ HORRIBLE TASTE

TGSHJ71 profile image
5 Replies

Hi Everyone ,

December I had puffy red right cheek , sore to touch , no cold, no earache, but my face ached.

Had my eyes checked all ok, saw GP , gave me some nose drops, didnt work , he said thought it might be my sinuses , i did suffer with sinus issues 60 years ago , but in my memory seemed different.

Had a scan , eventually had the results , sinuses were ok , but I did have a very small stone in my left salivary gland ( so small DR said amazing it was picked up ).

Came away not impressed with the DR , I had to practically do self diagnosis, and it was very difficult to understand his English.

Since then off and on same issues , but now I have a continual dry mouth and such a horrible taste in my mouth , coming from where I do not know , feel as if my body is poisoning me !!!!!.

Dentist today checked me over , but couldnt come up with an answer as to why , other than I have Lupus and could be related to it ......and mentioned Sjogrens ?

I am at a loss , any ideas ? would appreciate any help.

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5 Replies
Turquoise-1 profile image
Turquoise-1

Hi TGSHJ71

As a former Dental Nurse I was going to suggest you see a Dentist, so as you’ve already done that if there was anything untoward, (as they’re experts in all things oral related), it would have been obvious to them. Plus they can refer to Oral Surgery for further investigation, so I guess you can rule mouth problems out.

Maybe try Corsodyl mouthwash (diluted if too strong, for a week), increased oral hygiene + tongue scraping & chew sugar free gum to stimulate salivary glands. Sucking sugar free sweets might help with the dryness too. I like warm lemon water but it’s not for everyone as it can cause tooth erosion if overused & not always so good for stomach problems which I do have.

I’ve recently had a throat endoscopy due to dryness around my soft palate & mouth (I have SLE/CTD), Consultant ENT surgeon found nothing abnormal but said Acid Reflux &/or my pain meds (Nefopam) could be causes.

I have a newly diagnosed stomach ulcer so he could be right regarding the acid reflux drying my throat/mouth. Plus I have a long-standing naso-palatal drip (2 sinus ops), which has a bit of a funny taste …..

I hope these unexplained, troublesome issues soon disappear for you 🙂

chrisj profile image
chrisj

Hi - My taste is affected by sjogrens. Dry mouth, ulcers, fatigue and general discomfort and days when my taste is gone. Diagnosis of sjogrens a few years ago after a referral to the dental clinic from rheumatology and a biopsy at the clinic showing positive for it. Might be worth getting it checked out.

OldTed60 profile image
OldTed60

I’ve had this as my most unpleasant symptom for many for some years now. My neurologist says it’s called dysguesia. They recently tested me for micronutrient deficiencies, including zinc. The only thing that showed as deficient was B1 - which probably doesn’t explain the awful taste. I’m now on prescribed thiamine but awful taste seems sadly hard-wired now. I do hope it’s temporary for you. You have my sympathies.

I have systemic sclerosis, Sjogren’s and hypothyroidism plus severe spinal disc disease. My neurologist thinks it’s due to dryness and neuropathy of Sjogren’s, Gastroparesis, slow transit and SIBO plus silent reflux and hiatus hernia

michaellasmith profile image
michaellasmithAdministrator

Good afternoon TGSHJ71,

I hope you are doing okay.

I have copied in some links below that both include information about issues with the mouth and Sjogren’s disease, that you might find helpful.

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/wp-content/u...

You mentioned you were not impressed your doctor, so I have also copied in a link to a blog article that explains how you can change your doctor or get a second opinion. I would recommend that you mention new or persistent symptoms to a doctor, to ensure you are getting appropriate treatment.

lupusuk.org.uk/getting-the-...

As ever, keep us updated on how you are doing and take care.

Warmest regards,

Michaella 😊

SoooManyQuestions profile image
SoooManyQuestions

I've had this with Lupus. At night, the best help I hit on was sleeping with a surgical mask--the Korean N94 kind maintains a bit more distance from my face so that I don't feel suffocated. The moisture trapped from normal breathing made sleep much more comfortable. The mask helps in the daytime too, of course. Other than that I had to just soothe the dryness by eating "juicy" food like fruit and soup and frequently sipping tea, water, fruit juice, etc.

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