Hi everyone, not sure if it is my age, having reached the old fart stage at 58 but two of my teeth have just crumbled and broken off? My dentist will not see me unless I am in pain which I am not currently as the fillings are hanging in there. I feel quite horrified by this. Does anyone else have this issue?
Crumbling teeth?: Hi everyone, not sure if it is my... - LUPUS UK
Thank you, I am just horrified by this . For it to happen once is bad enough but my back tooth has just crumbled. There are bits of tooth in the gum holding the filling. I was actually eating an ice cream and thought it had crunchy bits it literally went in tiny pieces like grit. My gums bleed but I have no gum disease. My dentist always says my teeth are pristine and that the bleeding is inflammation caused by the morphine.
Bless you cecily 🙌🏻 I don’t look fetching myself with dropped side of face , one eyebrow and eye a good half inch lower than the other and droopy side of mouth add to that intermittent swelling , a horrible lesion and a squint with blurred eyes 😂😂 We should do a calendar 🙈😂😂
Joking aside I wish you well and hope you find some answers 🙏👍
That made me laugh out loud. Omg what a calendar it would be. What would we call it? The young people at the leisure centre used to refer to the attendees of the gentle exercise class as the crisps and old farts group. Very apt lol Thank you so much for the giggle. Laughter is the best medicine isn’t it? Xx
No I was told not bells my mouth is not so much the problem droop wise just slight drop and comes and goes, my tongue deviates to the right my eye is permanent but swells badly too . I’m waiting still to get help . my face that side goes numb and they said it looks like muscles contract and get stuck but I really don’t know 🤷♀️ It’s very painful now and wasn’t before but it’s been over a year and still waiting 🤷♀️ Covid hasn’t helped With getting help but I feel it’s linked to other symptoms.
Bless you sorry you have that, I fear we are bothered more by how we look than others are, but if our hearts are beating and air in our lungs , the way we look not so bad ay 👍🙌🏻 How I feel bothers me more 😡 And who we are is more important than what we look like. Ok, I have to tell my self this yes at times I’m gutted the way I look but today I guess is a good day.
Look at your pics and look past it 🙏
Best wishes to you 👍🙏🐝
Oh, please accept my deepest empathy...I have had a long long history of crumbling teeth, broken veneers, etc....Most recently today and yesterday. 🥺 It is maddening, embarrassing at best.
Things that have been told to me by Drs that correlate (I had no idea): Sjogrens, Hypothyroidism, stress-grinding (guilty of all to start🙋♀️🤦♀️). It is awful, and I am so sorry you are suffering from this. Sending healing thoughts and love.
Thank you so much. As I type this yet another tooth has chipped off and the filling party crumbled so very sensitive. I have dry mouth but no diagnosis of Sjogrens but I do have Hyperthyroidism and currently on 120 mg Levothyroxine. I am so very sorry that you have it too. Love and big Welsh Cwtches to you xx
Sorry to hear but I’ve got primary hypothyroidism and take/prescribed 50 micrograms Levothyroxine sodium/day.
Surely it’s not hyperthyroidism but hypOthyroidism??🤔 Typo?
According to the BNF it’s available from 50-200 micrograms. Milligrams is 1000 times more. Eg. 1mg=1000micrograms.
Please check these dosages! I’m getting worried.
Hello CecilyParsley, my sister had the same problem and she has Hasimoto. My father has the same problem and he has diabetes. My family has lupus but we dont have crumbling teeth problem but we have gum disease problems and mouth sores etc. I wonder if acid reflux can be the problem (acid can cause massive burn) or if you had tooth decay overtime which weakened enamel of your teeth? Are your blood results up to date? Has there been any indication on change in hormone levels, I would look in to that as well as the dentist. A strange one.... Hope you find an answer. With best, Lx
Thank you so much. I do get acid reflux and I have just been put on oestrogen pessaries although I went through early menopause at 40. No I have not had bloods done this year. I am not a priority since the Rheumatologist said I did not have Lupus but UCTD. I am afraid I am very much left to my own devices. Xx
Hi, my teeth are terrible since taking steroids for GCA. They are more stained, crumbling etc. The rheumatologist said that it is caused by large amount of steroids. I feel hideous and hate opening my mouth! Even my four year old grandson remarked that my teeth looked as though they needed cleaning! Nothing I can do other than having crowns to every tooth and do not feel up to that and could not afford it!
Oh I am so very sorry Jennifer. I know when I was on steroids for two years on and off in large doses I spent so much time at the dentist. Then when I first became ill I fell and smashed my two front teeth out. Fortunately they were able to screw in crowns. Dental work is so costly which is why I am praying that they can actually pull these bits of tooth out without having to cut the gums as they did once before. £200 is such a lot of money when you are on benefits. X
I know I have mentioned to you before, but I have a feeling you should keep a watchful eye on sticky blood.
If you even have a mild propensity for it, it can just get a little sludgy, and the tiny capillaries can not flow well. You may not experience a full , “ traditional” clot.
Lots of APS patients have terrible dental issues for this very reason. ( early root canals, etc. then root canals, etc.) poor blood supply is the culprit.
Sorry to hear this CP! Up until 21 I had dreadful trouble with my teeth - an ex said I looked like Metal Mickey when opened my mouth! Charmed! Then my dentist recommended I use dental floss - and much better since. I also had a crumbling tooth at that age and I would not recommend leaving it for many months (as I did as couldn’t afford the dentist), as the roots got tougher to stabilise it, as was rocking - and was more difficult to get out in the end. Anyway.. you mention going on oestrogen pessaries.. I was until last year, but had to come off them, and just use Regelle now.. but I wondered if your reason for using is quite bad atrophy/dryness there? Which I have. To the point of bleeding if “used” etc ;). Impossible. I also have “probable” Sjogrens (my rheumy has said) as very dry eyes (using Carbomer at night and Hylo Forte all day) and very dry mouth, plus life long extremely dry skin and constipation etc. Do you have these symptoms too? I drink water all day and all that. Just wondering also if you take high Vit D as deficiency causes tooth decay. I’m on 2000 iu’s as prescribed. Ring any bells?
Bells ringing very loudly. Yes to all really. Very coarse dry hair, very dry skin, I literally cream myself from chin to feet twice daily, dry eyes I use Hyloforte about six times a day. I have had repeated UTI’s and had eleven courses of MACROBID . The burning has become intense now to the point I could not use my Replens without severe irritation. I am only on my second week of the pessaries. I take Fultium D twice daily for Vitamin D deficiency too. I am hoping that the filling stays in until next week as if I have to have the damned thing surgically removed as I have had previously they charge £200 😱xx
I don’t know anything except anecdotal comments here a few years ago but my baby teeth all broke into pieces when I was a child and they blamed it on antibiotics. I was diagnosed at age 12 in 1982. There was someone else who posted here a few years ago about crumbling teeth and a whole bunch of people with lupus including me chimed in to say it has happened to us.
Just wondered whether you have had a Bone Profile done and depending on results i.e. if calcium is high, a PTH test - Parathyroid Hormone? I have Primary Hyperparathyroidism, hopefully cured as had operation last year to remove the overactive gland called an adenoma. Teeth are a fairly common problem with this disease.
Funny you should say that on my last blood test in December my Calcium levels were high. My GP redid them two weeks later and I have been unable to get the results. It was as if all my bloods were off the lab report had bold type reporting too high, too low on many areas. A Rheumatologist I saw in England told me after my results from St Thomas’s showed only a trace of vitamin D that I almost certainly had Hyperparathyroidism issues but my new Rheumy refused to test saying he preferred to deal with what I did have rather than what I might have. Once the surgery starts testing bloods again I am going to request a full blood screen. I hope that you are feeling better now? Xx
Well I'd strongly suggest you join a group specific to the disease I'm in both groups but would recommend FB one Hyperparathyroid Action 4 Change. There is a website too. I found this group much more knowledgeable and helpful in cutting through the crap many of us get faced with. If your calcium is elevated they need to do a pth test for you. I'm sure with Lupus you are used to NICE Guidelines and the trials and tribulations of getting a diagnosis. My rheumatologist also dismissed the possibility in 2011 and I've lost a fair bit of bone density as a consequence. Talk to your dentist about it too they usually know of the associations and ask him to write to your GP about your teeth and concerns.nice.org.uk/guidance/ng132
Yes very difficult to cut through the often patronising, condescending, dismissive Rheumy’s I have met. It does not help that I am often defensive, emotional and desperate despite my going prepared. I have had my diagnosis of Lupus given twice, removed three times over the past eleven years. The fight is real xx
Very sorry to hear that. I know how difficult it is. For me, at least I finally had my GP on side once he realised I was not an hysterical mad woman but one that was genuinely ill with a variety of complex things going on. None of them talk enough to patients and explain their approach/decisions which leaves you feeling your health isn;t the determining motivation. I'm sorry to say Endocrinologist's are no better at all. If you find you need to see one get a recommendation. Where are you? PS I have just developed TMJ too.
I am in South Wales. I have to say I have had very good service and interaction with Urologists, Gastrologists, ENT doctors, Maxo Facial Doctors, Orthapaedic Surgeons, Cardiologists, Opthamologist, physiotherapists etc it is only Rheumatologists that seem to dismiss, condescend and patronise me. I have not seen an Endocrinologist for thirty years and have to say that was not very positive either. My GP was fabulous until I decided to self inject for my Pernicious Anaemia. Since then she has been extremely distant which is a shame as she used to ring me once a month to see how I was and monitor me monthly at the surgery. She recently re referred me to Urology and the only info she gave was that I am obese a vegetarian with uncontrolled Fibromyalgia?? Two out of three right I guess but I was very disappointed in her.
Needs must. I was fortunate that my haematologist took note of family history of Pernicious Anaemia and Pancreatic Cancer and instructed my GP for injections. Irrespective of personal feelings they should do the same and proper job for all. I know there is not the selection of good specialists in Wales as in England but many of us with go straight to surgeons with our bloods. I know Mr David Scott-Coombes is one of the biggest names in Wales (a surgeon), based in Cardiff so you may want to keep his details. I've undertaken work via requests for Freedom of Information on the amount of surgeries for the group and if you do need anyone you want someone that does 50+ surgeries per year. Sadly plenty of patronising medical "professionals" in Endocrinology with poor attitudes towards patients, especially females, too. If you decide to go, keep my details and I can always get feedback for you if needed.
The Guideline is that you need specialist experienced surgeon in parathyroidectomies so don't let them push you to local if you need surgery. It's an area that where people can end up having multiple surgeries through inexperience. Many travel for the best, not a straighforward surgery as they can be tricky blighters to identify and often don't show up on scans. Hope you don't have it but it sounds as though needs investigation. Best of luck all round.
Yes, this happens, one went in lockdown, on my third I think. It is an autoimmune thang- hooray. Dry mouth, also grinding which has a posh name which is autoimmune. There was a brilliant lady called Twitchytoes who could explain the medical part - may be worth looking at old threads relating to teeth.
It is horrible and freaked me out more as my recurring life nightmare is my teeth falling out and then it happened.
Makes sure your dentist knows you are autoimmune as there are gels, tooth pasted that can help.
Well CP.....if you think 58 is the OF stage...think again!
I’m 20 years older than you & I still have all my own teeth!
Ok...lots of fillings...but no cumbling yet,
Have you told your dentist you have an auto Immune Disease?
Look up the British Dental Journal...a few months ago there was
a very interesting article how dentists should treat people with
these diseases,..I meant to print it....but being almost an OF.....
Good luck...hope you get some help soon.
Sorry to hear about your teeth C.P.. Mine have gone into decline since I came off hydroxychloroquine and my Sjogren's started to get worse. Dry mouth means the enamel doesn't have a defense and wears away, particularly if your gums receed, exposing the lower part of the tooth without the enamel protection. Does your dentist prescribe you a high flouride toothpaste?
I’m so sorry this is happening to you. Sounds like a nightmare. I have bad receding gums and I have dreams about losing teeth. At the mo I’m in double dosage of hydroxy and my face is a mess! Although through the stress at the mo I’m munching way more sweet things than usual. So maybe my spots are the result of over eating! I would like to feature in this calendar myself!
I hope it won’t get worse. Watch something funny to cheer yourself up! Watch a frasier! We’re doing a jigsaw puzzle of the world map! That is a welcome challenge!
Stay positive and well love
I’m taking 200mg twice a day (when I’m not having a flare it’s only once a day). I’m also taking myfenax 500mg twice a day. These are only for lupus - I take a myriad of pills twice a day! You must be in the same boat! I’ve got a boxset of frasier and whenever I’m down in the dumps it always cheers me up! Xx
Sorry to read this. A few things spring into my mind.
1) I'm sorry, but whoever says enamel and teeth last for life isn't right for everyone. Some people seem to have amazing teeth and never need a filing and others have terrible teeth, no matter how good they are looking after them. From my discussions with friends, I think there is an element of inheriting good strong teeth or bad. Why would anyone need implants or false teeth if they lasted everyone a life time? I've looked after mine well I think, but still have needed filings over the years.
2) Before I got my lupus diagnosis, I had a terrible spell at work and I was under a lot of stress, so much so that I ended up leaving. Anyway, I woke up one morning and my mouth was full of bits. I couldn't work it out immediately. It turns out one of my big back teeth had crumbled in the night. The dentist rescued it, which was a miracle. I think it was the closest you could get to needing the very remnants removed and losing it completely - to being able to save it. He placed a mental band around it and deep deep filled it. I can't believe that 10 years or so later, it's still in. But if the filling ever failed or fell out, it couldn't be repaired again. I have never had this happen before or since. When I saw my GP about my headaches and stressful time at work and explained about my tooth, we came to the conclusion that I was so stressed, that I was sleeping with my jaw clamped shut, grinding my teeth. and I had made this tooth crumble. The headaches were in a band of tension around my head. Tense muscles in head all night with stress. So I was prescribed a few weeks of muscle relaxants, to make me sleep with my mouth open, save any more teeth being damaged and to let the muscles in my head and jaw relax. It worked. The headache cleared.
3) Dryness - is very much autoimmune - skin, eyes, teeth, etc. Have you ever had the test on your eyes for Sjogrens? To see if you have dry eyes? This can be part and parcel of lupus or sjogren's or overlap with any other AI / CTD illness. I have sjogrens and I told me my dentist right away. He helps by being extra vigilant when doing my check ups. So far, it hasn't effected my teeth. But my understanding is that if you have less saliva in your mouth, your teeth aren't so well protected against acids from food and drinks. People with dry mouths should have a very good oral hygiene routine but also use saliva replacements. Chewing gum can help you produce more saliva - sugar free of course. I've also had some pastilles prescribed by my GP. Again sugar free. I know you can but them on Amazon. But sucking or chewing will help keep mouth moist. Little sips of water throughout the day. I tried to see if they were a LUPUS UK information leaflet on teeth but couldn't find one. But I know in my lupus books I have seen pictures of teeth effected by the dryness of sjogrens. Tooth decay is a very real issue for this condition. (Sjogrens is sometimes referred to as sicca syndrome).
Just a few things to think about.
I noticed that dentists still aren't open. Not sure if people have even been able to access emergency dental care during this pandemic. But I think you need to see a dentist when you can to assess the damage and discuss possible causes.
I hope this all makes sense and that the replies help you.
Thanks Wendy. I have had my eyes tested by the Opthamologist. He was very thorough. He said strangely my eyes have very dry patches and prescribed Hyloforte. My surgery stopped them ( budget cuts) but when I saw my GP and told her that the new drops were useless she put me back on them. My lovely dentist who referred me for TJD and mouth ulceration left and the new dentist sadly was nowhere near as thorough. I have been told that he too has left now so I hope the new one will be better. I am aware that as I have been using the treadmill I have been gritting my teeth with pain so this might well have contributed. I do drink water all day. About four litres as I had to do a bladder diary with input and output.I have contacted my dentist but they will not see me unless it is an emergency and I am in pain. If this filling drops out I will be so fingers crossed 🤞🏻Xx
Bless you! There's always something isn't there. I hope it doesn't become too painful for you.
You sound like me, when I did my 3 days input / output for urology - which they never actually looked at anyway - I drink between 3 and 4 litres a day. I am always thirsty! My mouth and throat always feel dry. I love my tea and coffee - decaf of course - but my favourite mug is huge! 400ml!
Keep us posted.
Ha ha I can beat you Wendy my favourite mug is 700 ml. I restrict myself to two a day .Not decaf ( shhhh 🤫) Choking is a real issue for me. Yesterday I picked up a tiny new potato that I had cooked for my hubby, but it and choked. Now I have nasty purple bruises on my back where he hit me to get it out. But I should think positive and get on with my life because my condition is only mild right?.... sorry turning into a twisted bitch before my very eyes lol xx
700mls! I want one! How have you got the strength to lift it? That's a workout right there! I have 2 normal coffees in the morning, as I am like a zoombie when I get up, especially with an alarm. Left to my own devices I wake between 9 and 10am, so 7am alarm during term time is terrible. Then decaf tea and coffee from then on. Goodness, if I had a £1 for every time someone said your disease is mild, you're fine.....I liked that this too was covered by Melanie Sloane's paper - it said that even for those with organ involvement, fatigue and aches etc are all much more debilitating than the organ involvement. I am putting in my letter to NHS Rheumy that they might considered my symptoms mild but it effects my life every day. The contrast between my heathly friends life style and mine are vast - I am not a normal 45 year old living a normal life!!!! Please do not choke on any potatoes anytime soon. x
Thank you for this. I saw a Professor at Cardiff for my dry mouth and ulceration about neighs years ago. He said I should use fluoride based mouthwash, chew sugarless gum, and he prescribed soluble prednisolone pressed on the ulcers. He advised that as I was under St Thomas’s at the time it would be better for them to undertake a lip biopsy. I told them when I went for my follow up but sadly they discharged me saying local Rheumatology could deal with my issues .That never happened primarily because I had no faith in any of them and refused to see them for two years until I got very sick . My chewable saliva sweets got binned in budget cuts because I have no diagnosis xx
What a mess. So sad that you have been let down so badly, by so many.
Many of these saliva products can be bought online. Mine were a little cardboard dispenser with red small pastilles. I can't remember the brand.
I use an electric toothbrush and fluoride toothpaste. But I know my dental surgery sells medical grade products if you need them. I have no idea how much they are though.
Cecile, sorry that Dentist are only seeing emerg patient’s right now. I do have a dental back ground and along with the dry mouth, clenching and one old fillings , my guess is one more to add to list. Old amalgam filling expand over time causing teeth to break and crumble. You could be eating soft foods and it just is time. When one goes the bite changes and extrudes so more pressure is placed on teeth in the area. So it’s a chain reaction if not fixed. Being that your feeling something, the tooth may still be alive. If it’s broken below the gums, depending on many factors I won’t get into, it may be best to pull it. With sensitivity, watch what you do on that side and usually the dentin under the enamel recedes making it not as sensitive. It may keep breaking to where you need to get it repaired or removed sooner than later. Note if your pain gets bad enough, wink, wink, they will book you sooner. Isolation during COVID is a big issue now so good luck. I have seen adults in same families with someone not looking after there mouth having no cavities, and the other sibling doing everything possible having cavities more often. All you can do is try your hardest to maintain them.
All the best to you. 🤗🤗
My heart goes out to you!
I went to my NZ dentist with a mouth full of mercury fillings and continual toothache and very uneven teeth which greatly affected my confidence all my adult life up to that point, after emigrating to work. - A mouth full of fillings because British dentists FARMED my teeth and a whole load of other people of my generation.
I had gone to the UK Dentist faithfully every 6 months 😞
I was told by my NZ friends that if they find out its a British dentist moved to the area, they are avoided.
They laugh that our fillings are pushed in so quickly you can almost see the dentists thumb print impression.
They criticise mercury amalgams as they constantly heat up, then cool which causes minute cracks in the tooth, which results in the ultimate shattering and crumbling of the tooth.
My NZ dentist took all mine out!
He explained that my teeth wernt straightened because it was a little harder with mine and the UK dentists lacked the technical ability, lazy or lacked empathy.
The layers and layers of new fillings were completely pain free. A had a mouth guard to stop any fragments being swallowed.
I have never had any pain or any need to see a Dentist in the decade since and people remark on how lovely my teeth are.
Your misery is caused by the cruelty of British dentists x
Wow, that is really scary to hear. I am so pleased for you that you have now got a dentist you trust and are pain free. I had a wonderful dentist when I first worked. He was private through Denplan and drove a Porsche and was so incredibly handsome. I live in an area of great depravation in the South Wales Valleys and our dental practice has changed hands every year. No continuity or consistency sadly xx
Yes its a lottery even more so in Wales. My partner is Welsh. I’m home from NZ now but if I have any trouble I will want to fly back to NZ. I do not trust UK Dentists now after they butchered my teeth. They only have there profession to blame. I hope you can get it repaired. I really feel for you. Best of luck for a good outcome x
Just wondering whether you’ve ever been prescribed Alendronic acid (Alendronate), a bisphosphonate or taken it?
Often prescribed to patients on long term corticosteroids and post menopausal women for “bone protection”.
As people have said here there is a serious condition called “steroid induced osteoporosis” and so Alendronic acid is usually prescribed to slow down the bone thinning?
But unfortunately the downside with this drug is that it can cause one’s jaw bone to necrotise/thin/die/rot?
Could your crumbling teeth be part of the bigger picture of jawbone necrosis? Have you ever had a jawbone scan?
What does your dentist think? Have you seen a picture of your jaw bone and your embedded teeth 🦷? After all teeth are embedded in the jaw bone so if the jaw bone itself is not healthy then the teeth have not got firm roots? Just wondering...
Hi Sue, yes I took AA for several years on and off in my 20’s and 30’s as my asthma was brittle and I was on IV, oral and inhaled steroids for long periods of time. My dentist took x rays of my teeth last year and always felt my jaw. I have had trouble with TMJ D and TN in the past two years and so he has referred me back to the dental hospital. When I get to see the dentist I will ask for an update. Thanks for the info. I had a heel bone density scan a few years ago and was fine but I have not taken steroids more than a two week course three times last year.