SLE & 🦷 : I am absolutely devastated this morning... - LUPUS UK


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SLE & 🦷

Greentomatoes profile image

I am absolutely devastated this morning. My tooth crumbled when I was eating brown bread. I’ve had 2 dental abscesses in 4 months. I look after my teeth. I lost 2 teeth years ago (I didn’t know I had SLE) and was fobbed off by dentist as it must be my poor dental hygiene.

Now I’m here again. I feel I don’t have much left. I’m overweight, lost my hair, lupus brain fog, pain, oedema and I keep smiling for my family and friends.

Now I’ve lost my smile. Can’t take much more.

Sorry but I’m lost xx

18 Replies

Maybe worth getting another opinion? My cousin suddenly found teeth loosening and her new dentist said "but you know about your gum disease ..." No, she didn't and a complaint established that her previous dentist had known how severe it was but had never told her nor recommended remedial action and he was told to pay compensation. If a patient has something that could be due to their poor dental hygiene - and she definitely didn't plus he had said it was good - it is up to the dentist to tell them and do what he can.

It won't bring to tooth back - but it may prevent worse.

I love peanut butter on toasted wholemeal bread every morning but it does leave a huge amount of breadcrumbs left in one’s mouth.

This can be attacked by bacteria producing mouth acid causing tooth decay and gum disease.

Hence after eating every meal I always rinse my mouth out with alcohol free antiseptic mouthwash.

Huge amount of food debris is usually spat out 😩

After every meal make sure mouth is always rinsed out or if not possible try sugar free gum which can help get rid of crumbs left in the mouth. Chewing helps by producing alkaline saliva which neutralizes the mouth acid. Hope this helps?

A community dentist once told me, “tooth decay and gum disease are preventable”and I do believe that👍

Unfortunately, mouthwashes can make matters worse - there are good and bad bacteria but mouthwash kills both. I have never used mouthwash, I clean my teeth once daily and have no dental problems at all, the only teeth I have lost have been deliberate extractions for very good reasons. Otherwise I have all my teeth, more than many people of nearly 69 can claim I think!Personally, I think washing leftovers of food down with a nice cup of tea is a better idea ...

What about interdental brushes or toothpicks for getting rid of food debris stuck between the teeth?

I have to use these because I find bristles from a toothbrush (too thick) do not get rid of the plaque build up, that dreadful film of bacteria behind the teeth or tiny particles of debris stuck in those tiny spaces between the teeth.

I had a serious mouth infection once when I stopped doing this for a while.😩 Do not want a repeat.

If I don’t do this, halitosis arises.😩

You can also gargle with salty water which is also


“Personally, I think washing leftovers of food down with a nice cup of tea is a better idea ...”🤔

Have you checked to see whether all the debris have been washed down by rinsing with water and spitting out?

What species of ‘good’ bacteria are in one’s mouth and do no harm?

Can you reference any? 🤔THANKS.

A dentist once told me there are around 40 species and most are pathogenic once they enter the gums and broken soft tissue.

I have all my teeth, more than many people of nearly 69 can claim I think!…”

Yes, absolutely supposed to last a lifetime unless…?

Which bit of "I don't have any gum problems" failed to sink in? My teeth are in perfect condition, so are my gums and I do use interdental aids, I do';t need a long lecture from you on dental hygiene.

Like the entire body, the microbiome should be in balance. Put weedkiller indiscriminately on a garden and you kill everything - same applies to your mouth with antibacterial mouthwash.

Lecturing? Who’s lecturing?Oh my god!

Laugh out loud?

Weed killer? What?🤔

Would appreciate some answers to my queries but?

Nothing wrong with Listerine?

I just fail to understand why you have directed your response at me.


Who’s saying u have?🤔I’m just responding to what you’ve written.

Not you personally.😳

bones-bones profile image
bones-bones in reply to PMRpro

I think you are being very touchy. I can’t see any harm in Troublesome’s reply. We have to be kind to each other !

Greentomatoes profile image
Greentomatoes in reply to PMRpro

Thank you xx

What an awful experience for you- I’m so sorry.

It’s not terribly uncommon for Sjögren’s syndrome to run along side SLE. It just accelerates dental decay in our autoimmune profile .

Have a listen to Dr Elizabeth Price , in Swindon.

I call her the, “Sjögren’s Whisperer.” She’s a very astute rheumatologist, but she specializes in Sjögren’s Syndrome.

PMRPro, a very useful one to save for the PMRGCAuk forum, as I suspect a few members there could benefit.

PMRpro profile image
PMRpro in reply to KellyInTexas

Why not post it there?

KellyInTexas profile image
KellyInTexas in reply to PMRpro

Will be happy to do so.

Yes, due to a lack of salivation Sjögren’s disease sufferers are more at risk of developing mouth ulcers and infections hence mouth moisturizing gell and mouthwashes are often prescribed eg Biotene?

Depends on patient- can be ok- dr Price has comments on this . See above on link to her webinar I embedded.

Yes, I personally find my prescribed Biotene moisturizing mouth and lip gel very soothing.

I also have tear replacement drops prescribed and find those very comforting.👍😘😘

Hi there,

I really sympathise with you. I too have terrible teeth. I eat healthily, brush daily and have started using mouthwash. All to no avail. My teeth are falling to pieces. It does seem very common for people with Lupus to have poor teeth. Some people say it’s because of a dry mouth which I do have of a nighttime, I have to drink regularly throughout the night to relieve it. I don’t think it is through any fault of our own but it is worrying. I am nearly 50 and wonder how much longer my teeth are going to last for. If I had the choice I would have them all out under general anaesthetic and have false ones instead. I am petrified of the dentist, I visibly shake when I go even for a check up.

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