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

LUPUS UK

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SLE & 🦷

Greentomatoes profile image
12 Replies

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

12 Replies
PMRpro profile image
PMRpro

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.

Greentomatoes profile image
Greentomatoes in reply to PMRpro

Thank you xx

KellyInTexas profile image
KellyInTexas

bssa.uk.net/live/news/news7...

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.

PMRpro profile image
PMRpro

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 ...

PMRpro profile image
PMRpro

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.

ncbi.nlm.nih.gov/pmc/articl...

PMRpro profile image
PMRpro

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

I DO NOT HAVE A DENTAL PROBLEM.

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 !

KellyInTexas profile image
KellyInTexas

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

tiredmum profile image
tiredmum

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.

Ingrid1234 profile image
Ingrid1234

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.👍😘😘

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