Log in
LUPUS UK
23,935 members19,235 posts

Awful teeth

Hi I was wondering does anyone have teeth issues?.. I have had Lupus for 22 years and after having healthy, reasonable teeth, now they are not so much.

The colour are not great and also I have lost quite a few over the years, they chip and are very brittle, however the dentist insist they are strong overall.

My main concern is the cost of treatment and everytime I go to the dentist, it is expensive, I am on benefits and do not qualify for free treatment, surely when an illness causes this unfortunate problem, it is entirely of no fault of our own and I have no confidence because of it, whatsoever and make excuses not to socialise.

Recently lost a further tooth and it is at the front which is an nightmare...

Thank you Luppies jx

80 Replies
oldestnewest

😔 that’s must be really difficult. I’m not sure this is any use to you but anything to do with your front teeth is not classed as cosmetic so the nhs will fund it. Of course you’d still have to pay the minimum check up rate.

What benefits do you currently get? There must be some help out there for you

X

Reply

Thank you for your advise, I really don't know where to go with my teeth problems, any input is welcome...

Many thanks Lisalou jx👍

Reply

Do you have a regular dentist? X

Reply

Yes I do, they are very good and have a good reputation, although they really don't know what to do with me, to make my teeth better, they obviously are quite happy to keep taking my money..

I am so frustrated with my pedicument..

Thank you again jx

Reply

It would be a great idea for you to research local training hospitals.

But if your dentist does not have the knowledge to save your teeth I would highly recommend you ask them to refer to a dental expert within a hospital. X

1 like
Reply

Good itea and I will do that...

So thankful for the advice, jx

Reply

Hello Tufty123,

Thank you for your advise, I was thinking, maybe had the meds I have taken over the years, affected my teeth surely, they haven't helped.

I certainly need to make some investigations..

I appreciate your comments, jx

Reply

Anything that could affect your nutritional intake will have knock on effects on hair, skin, nails and even teeth I would guess.

I have eaten a lot more fresh and unprocessed foods in recent times and i haven't had major problems with my teeth since i started doing so.

Some meds will also affect uptake of vitamins.

Reply

Hello, thank you for replying to my post

I have a good diet and eat lots of fruits and vegetables on a daily basis and never eat prosessed foods, that's why I feel so unlucky, I also take great care in my oral hygiene...

Thank you

Overnighthearingloss jx

1 like
Reply

Hi iv got same problem iv got sygens syndrome, dentist had to cap top of teeth said it was my condition having problems all the time and iv always had strong teeth I’m 64 now

1 like
Reply

Thanks for your input, I really appreciate it and I have heard the same thing...jx

Reply

I think Sjogren's can cause extra bacterial build-up due to lack of saliva (might account for discolouration)...but I'm sure someone with SS knowledge will be along, and I'll follow your post as I have similar problems...hoping you have some useful answers! xxx

1 like
Reply

Yes Sjogren's can have a terrible effect on teeth because of the lack of saliva.

Mine are crumbling and snapping on a regular basis now and have lost 3 in the past year. I know the warning signs now and tell the dentist but it's ignored and low and behold the tooth in question snaps sometimes at the gum level.

Mine you to be totally honest I don't think my dentist has a clue as I have had to scour the internet to find oral hygiene products for dry mouth, you would think in this day and age all dentists would of at least heard of the problems caused by a dry mouth Sjogren's and Sicca which can be connected to other health problems.

I now have partial dentures and they cause their own problems with a very dry mouth.

Also if you are not working in the UK you are entitled to free dental care and if working you can go to your local dental hospital and get treated, it may be a student but there is always an experienced dental surgeon supervising everything. So try your nearest dental hospital it's free and they tend to be a lot better than some. X

4 likes
Reply

So thankful to you Boudica1 for the information.

I will make Investigations and try to find a dental hospital, maybe they can shed some light on my situation and give me advice...

Best wishes jx

2 likes
Reply

Have you tried products that are designed for people with dry mouth?

I found by chance when looking on line for oral hygiene products that didn't burn the mouth out and came across Biotene products they are specifically designed for people with dry mouth problem and it does help a lot. Also I have heard some people talk about Ximelts that sticks on the gums over night to ease the problem of waking up with dryness during the night. I haven't tried the over night one yet but I am considering it.

Good luck with finding something that helps you.

X

1 like
Reply

Great advice, I have taken the information all on board...

By the way my dentist once asked me if I grinded my teeth in my sleep, Incidentally, I don't!..He said it looks like I did...

My teeth are a mistery to me...

Many thanks jx

1 like
Reply

Thank you! That's good to know! Mine have become very brittle, just the front ceramic of a front tooth - previously damaged - has crumbled so far (argh) so I guess I need to do something to replace saliva....any tips? Suspected Sjorgens on my medical notes, but no advice given...hoping you find a more understanding dentist...I've been through a few! xxx

Reply

Hi yes mine are just the same tips had to be replaced, iv got mouth sprays , lozenges, and mouth gel I use something all the time

1 like
Reply

Fabulous tips! Thank you! xxx

Reply

My dentist strengthens my teeth with white composite. It’s the stuff for while fillings.

Some of my teeth were see through. Fingers crossed this has helped.

I also have a saliva spray from gp, it creates false saliva. X

1 like
Reply

Thanks for that! I have white composite on the face of my front tooth (though it's not quite so white LOL!)...seems to be holding after a year even though it's very slender, hoping your stay ok too!

I'll ask about the saliva spray! xxx

Reply

It’s called Glandosane. Synthetic saliva. My rheumatologist said dry and and dry mouth go hand in hand so I have eye drops too. X

1 like
Reply

I'm glad it's sane :) ...my GP thought I was a nuttah when I went in with dry eyes and hair loss (he still thought I was making up SLE at that point, despite dsDNA!) but after speaking to the rheumy, he sent my a prescription for eye drops...still just ?Sjogrens on my notes

Thanks! I'll gather strength to see my GP again! xxx

1 like
Reply

Lisalou I think Glandosane contains sugar? Biotene and Oralieve are both recommended for chronic dry mouth/ sicca and if you have Sjögren’s you should be entitled to this and Duraphat toothpaste on prescription. X

2 likes
Reply

Yes, I have had the same composite, it has helped slightly, but no much..

Best wishes jx

Reply

Yes, I have had composit, but mine wasn't white enough either.

What I wouldn't give to have teeth, where I'm not afraid to smile...

I will ask for the saliva spray too.

Best wishes jx

Reply

I have found by chance looking on line for toothpaste and mouth wash that didn't burn my mouth and came across Biotene products that are specifically designed for for people with dry mouth and it's good.

I have heard people say Ximelts that they use at night. It sticks on the gums and helps with the dry mouth at night.

I haven't asked if I can get anything on prescription yet but I am thinking about it as I don't have to pay for prescription's now. For those that do though it may be cheaper to get them OTC or on line. They are a bit more expensive than the stuff you find in the shop's but they are miles better.

Hopefully you will find something that helps you soon.

X

1 like
Reply

Thanks so much! Notes taken and I'll drop by the pharmacy to give them a try before broaching the subject with the GP! Free prescriptions in Scotland! xxx

1 like
Reply

Biotene or Oralieve plus Salivex and Duraphat toothpaste (oral med consultant requested) all on my repeats so free.

1 like
Reply

Thank you, I appreciate your advice... jx

1 like
Reply

I sympathise as I too have SS and my teeth are ruined. You never see me smile with my teeth showing tho other people say I don't know what you are worried about. But they didn't see my teeth before so.....I get AS Saliva spray from my GP on script which you should get free if you are on any of the main benefits. Eye drops regularly and the spray, when you remember to distinguish between thirst and dry mouth due to lack of saliva. Took me a while to realise I didn't have an unquenchable thirst constantly. I don't think the usual dentures (on the up side) are suitable for SS patients tho so we can eventually have caps and crowns as dentures won't hold and muck up your saliva, so I heard. I should investigate that and I will! If your local dentist can't cope do ask for a second opinion through your GP; you will get it. Good luck and if you don't have the spray give it a go.

Hugs to all luppies and you yourself.

3 likes
Reply

Yes, I will and great advise so helpful.. jx

Reply

Thank you eekt, I have heard something about the l lack of saliva can cause bacterial build up. It may have something to do with decay on the teeth.

Thank you for your reply jx

1 like
Reply

Hi butterfly1964

I have SS overlap Lupus .

I’ve just had a visit today at a national health service dentist ( been waiting for several months ) I’ve been prescribed a high Fluoride toothpaste , dentist said would help me keep my teeth .

Hope this helps , it’s only available on prescription . X

3 likes
Reply

Hi butterfly1964, willow1414 and others.

Yes, do ask for the high flouride toothpaste.

As several have suggested, pursue screening for Sjogren’s Syndrome. Ask your dentist to please write to your Gp or Rheumatologist to ask for your blood to be tested (or re-tested) for Sjogren’s Syndrome.

Sjogren Syndrome Foundation and BSSA say it’s often a dentist who flags Sjogren’s when a person with good oral hygiene is losing teeth frequently. (Search Sjogren’s and dentist or dental problems.)

Note: If you get prescribed pilocarpine for dry mouth symptoms, do take it immediately after a meal with 8 ounces/250 mls water or it may make you sweat profusely and may cause urination urgency and frequency.

Please share if any of this helps.

Warm regards,

Harmony2

3 likes
Reply

Great many thanks jx

Reply

I am so happy I have asked the advice on this helpful forum, thank you all!.. jx

2 likes
Reply

This forum is a great place to be! xxx

Reply

Thank you good advice jx

Reply

Thank you for your reply and comments jx

Reply

Thank you, best wishes to you too jx

Reply

My rheumatologist says it does happen a lot....I went to specialist and saving up to get all pulled and dentures bc it would cost at least $100G to fix everything. Sorry to hear and wishing you the very best of luck. I'm in the US and our Medicare program doesn't cover anything....hope you have better resources wherever you are. 💜🙏💜

Reply

Oh poor you, it is so unfortunate for people in the US, it must be very difficult for you..

Thank you I have heard this can happen,

Best wishes jx

Reply

My teeth were great until a few years ago when they started to become more brittle. Little pieces break off and I have needed more fillings. My gums started receding around the same time and I frequently get mouth ulcers, especially on the sides of my tongue.

I have always just assumed that it was all part and parcel of my autoimmune diseases. What others have already said about dry mouth issues and greater bacteria build up makes a lot of sense.

I hope you get some treatment sorted out soon x

1 like
Reply

Thahk you, much appreciated jx

Reply

Omg..

Reply

Tell me about it, it's a nightmare! X

Reply

Oh my gawd Yaaaaas--they crumble despite flossing, gargling and brushing diligently. Thought I was the only one. And it is frustrating when the dentist thinks you are pulling his leg about taking care of your teeth...!

2 likes
Reply

Exactly, I take care of my teeth diligently and then I find myself with worse teeth..

Thank you for your reply jx

2 likes
Reply

No problem, I know how frustrating it can be.

Reply

Have you been checked for sjogrens? I think sjogrens can be secondary to lupus and causes dental issues

3 likes
Reply

No I need a consultation with my Rheumatologist ASAP

Reply

Thank you jx

Reply

I just started low dose naltrexone. Im hoping that will help. Plus im planning on going to Cancun Mexico this August to get umbilical cord stem cells. Im hoping it will re regulate my immune system and decrease the inflammation

Reply

Oh good luck with that and thank you... I have noted your comments jx

Reply

Thanks for your reply, many good wishes jx

Reply

Did the consultant say reason?

Reply

No I have to have a consultation with him to discuss... Jx

Reply

Ok. Thank you. I have tried it but find beneficial feeling was short lived just because of effect of natural swallowing.

Reply

Noted, best wishes and thanks again jx

Reply

It contains sugar

Reply

Hi butterfly, I also am having terrible problem's with my teeth. Brief history, about 4 years ago I was seeing a nhs dentist. I had to have an extraction and developed a dry socket after. Very painful. She knew I have sle and Sjogrens and I asked if this cld cause the damage. She told me under no circumstances that my conditions wld not cause my tooth problems! I did a lot of investigation and found she was totally wrong. I lost all confidents in this dentist and didn't go bk. Of course I started having more problems, teeth cracking, breaking of and tooth ache. By the time I picked up courage to see another dentist I found the waiting list for nhs dentists in my area are horrendously long so I've had to pay privately at the mo. £310 for initial consultation, 2 x-rays and 4 extractions. Treatment is on going but it's eating into what little savings I have. Out of desperation last mth when I saw my rheumatologist I told him my story. He said he wld email the restoration dental clinic and finger's crossed they might see me due to me having Sjogrens. Low and behold I received an appointment with them in August. I'm not expecting them to take me on, that way I can't be to disappointed. But surly to god because of Sjogrens something must be done? I'm going to end up with full dentures at this rate, that's if I can afford them. Maybe worth asking your rheumatologist for help. He did say referrals normally come from your dentist but at that point I didn't have one. Oh and if your on income based ESA support group I read that your treatment shld be free.

3 likes
Reply

Hi Smudge, many many thanks for your post, you certainly know exactly what I and many people have endured on this forum, regarding our teeth issues and I will certainly explain, in detail my teeth problems with my consultant on my next appointment.

It's quite uplifting to find others who have experienced the same issues as you, I and don't feel so alone listening to you and your pedicument.

Lupus can make you feel quite isolated and different, In many ways and to hear all your positive stories makes a difference..

Take care jx

3 likes
Reply

Very sorry to hear of your dental problems but you are not at all alone. Not only have I experienced extensive dental work myself but know that it is common amongst people with lupus. I found that using a high fluoride toothpaste Duraphat 5000 (available from your dentist) helps. I now also have a fluoride treatment painted into my teeth every 3 months by my dentist. This costs about £50 but cuts down on the cost of fillings overall and seems to have been helpful and very preventative for me. Wishing you the very best, Lily

2 likes
Reply

Great to hear your comments and thank you jx

Reply

Hi - yes I've had problems with teeth. Diagnosed with mild SLE in 2005 and on one app in rheumatology I mentioned that my mouth was sticky and I needed to sip liquids when I was eating to swallow certain foods comfortably.

I was referred to our dental hospital where they did a biopsy and said I had sjogrens, saliva glands not producing enough. They found a rotted tooth at the back....I'd been in no pain but they insisted on taking it out, roots were sound. In the end they removed several double teeth that they couldn't save. Last year my gums where my 2 front upper teeth are became inflamed. My gps were reluctant to treat it and sent word to the dental hospital. Had to wait some time to be seen. Meanwhile I bought gels and mouthwashes in the hope of stopping it getting any worse. When the dental surgeon finally saw it she said it was lupus damage :/ and prescribed a steriod nasal spray...what??? I questioned it but she just said don't spray it up your nose its for your gums.

So off I go and use the spray having waited in the hospitals Boots chemist to collect it. Did it work? no it didn't and when I saw the dentist again this year she denied prescribing the spray...until she checked her notes, became a bit flustered and then prescribed a gel to use just once at night before I went to sleep. I've used said gel and the redness in my gum does fade a little overnight but it still hasn't healed :/ It flares up again during the day. My gums receding slowly. I try not to smile much because of how my gum looks, I'm very conscious of it, and I'm upset that it wasn't treated much sooner.

I don't understand why you have to pay. My hospital dental care comes courtesy of the NHS, I'm in receipt of a pension...72 years old...with pension credit. Have you asked for a referral to hospital???

1 like
Reply

No Chris I haven't but I most certainly, will do, I will definitely ask to be referred to a dental hospital. I really think regular dentist don't have a clue and just clutch at straws.

I too have receding gums, I take great care with my dental health, have never smoked and yet all these problems with my dental health.

I sympathise with your situation and wish you my kind regards... jx

1 like
Reply

Thank you. I'm sure you'll find more knowledge about your problems in a dental hospital. They said my oral health was good in spite of the problems . I've tried to look after my teeth like you. Good luck xxx

Reply

Good luck to you too jx

Reply

It is amazing how many of us are being impacted by dental issue, etc. There is an excellent summary for dental care in BSSA newsletter this mouth & a recommendation by the dentist who has Sjogrens which is whollymolar.com which mentions some the points about caring for our teeth. One interesting recommendations is having an alkaline mouth & recommending using colgate sensitive pro-relief , as it contains arginine, mentions duraphat & GCMI paste plus online...

As I currently have an abcess from old root canal I sometime gargle with salt water to take down the inflammation....ml

3 likes
Reply

Thank you I am getting so much helpful advice from you all, its quite amazing, this forum, is worth its weight in gold!!

Best wishes jx

2 likes
Reply

Completely relate. I’m having treatment for complex dental problems dating back to childhood. I’m going to need 3 more crowns following 5 replacement root canals. When I asked my dentist if he could give me a discount given he’s replacing 2 gold crowns, he looked a bit affronted and said “NHS doesn’t do part exchange!”.

Then receptionist was booking me in and said she regrets not looking after her teeth better as a young person now. She was trying to be sympathetic but I had to tell her that my mum had similar problems to mine and sweets and juice were banned and she stood over us as we brushed our teeth daily. Yet I just about lived at the dentist and am starting to again now. I don’t earn due to Sjögren’s and the 3 replacement crowns and root canals will cost about £600 or more. I can’t help feeling that if you have a disease as cause for dental problems it should be free as it’s not cosmetic? He suggested I might opt for extraction otherwise as this is only £15. Yet people get free joint replacements. 🤷🏼‍♀️

4 likes
Reply

Morning Twitchytoes,

I can comlpleley and utterly relate to your situation, you are made to feel ashamed by the ignorance of people's attitudes (dentists etc)..

My teeth are a darker colour than they ever was and I actually had them whitened a few years ago and it didn't work. The dentist said he had never known it before, I guess he had now.

Many thanks for the reply and best wishes jx

2 likes
Reply

I lose them. They crack. I’ve decided to buy a 3D printer and just keep remaking sets. 🤷‍♀️😁

3 likes
Reply

Thanks for reply, it's not the best situation, is it?... Take care jx

1 like
Reply

You as well. I’m thinking dentures in a few years when the front ones don’t have laminates on them anymore.

1 like
Reply

Either way, it is a depressing thought, fingers crossed it'll not come to that, best wishes jx

Reply

I live in North Yorkshire and you can't get an NHS dentist.Some have with waiting lists but you're waiting 18 months to 2 years. I've been on steroids (amongst other things) for 10 years now. I'm only 39 but I've lost 8 teeth, 3 in the past year. I'd give anything for a dentist as being so gap toothed has wiped out my, already beaten, self confidence

1 like
Reply

Hi J91980, sorry to hear what your going through. Your post was of interest to me as I also live in North Yorkshire. It's a nightmare trying to get an NHS dentist. You may find my post above interesting. Finger's crossed that you find a nhs dentist very soon.

Reply

Thank you, so your having problems too it is so frustrating and I wish you well too.. Best wishes jx

Reply

You may also like...