Dental Issues with Behcets : Please take the... - Behçet's UK

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Dental Issues with Behcets

paige1991 profile image
paige1991

Please take the time to read I know it’s a long question but I need some help. Ok so I’m looking for some information on dental problems after a diagnosis,

I have had the effects of Behçet’s since 2009 and because of the pain in my mouth I spent almost 5 years completely unable to use toothpaste or a toothbrush I was only able to use interdental brushes on top of that the only thing I could swallow most of the time was Coca Cola which I didn’t drink before I got ill because of the amount of sugar in it anyway now my teeth are in such a horrible condition that I actually can’t look in a mirror without crying I don’t want to go outside because of the embarrassment I force myself not to smile or laugh and if I do I automatically cover my mouth with my hand I had to have the front of my top 6 at the front rebuilt because they had decayed so much and it doesn’t seem to matter what I do now they just keep breaking down I have holes in almost all of them and the backs of the front ones have holes in too think has sunk me into an unbelievable state of depression and anxiety both of which I am taking medications for so basically my question is has anybody else needed to have teeth replaced because of this and if so how can I get some help with mine I need them all replaced and my dentist keeps saying that I just have to wait until they completely break and try to keep mine but on top of all of that they hurt so much it doesn’t seem to matter what I eat or drink it’s just so painful all of the time. I Really Need Help and I don’t know where else to ask this question

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31 Replies

Hi paige1991,

The short answer is yes, there's a link between BD and dental problems (teeth, cavities, gums). BUT it's a 2-way street: BD mouth ulcers can make your oral health worse because it can sometimes hurt too much to brush and floss -- but not taking care of your teeth and gums can actually make your BD even worse.

So here are some articles you might want to share with your dentist and other doctors:

(1) Oral health is impaired in Behçet's disease and is associated with disease severity (2006)

[Improving your oral health -- brushing, flossing, and seeing your dentist regularly -- may make your BD less severe over the long term.]

academic.oup.com/rheumatolo...

(2) Relationship between periodontal parameters and Behçet's disease and evaluation of different treatments for oral recurrent aphthous stomatitis

[BD patients' gums are often in worse shape than those of people without BD]

T Arabaci et al. J Periodontal Res. 2009 Dec.

pubmed.ncbi.nlm.nih.gov/190...

(3) The Evaluation of Saliva Flow Rate, pH, Buffer Capacity, Microbiological Content and Indice of Decayed, Missing and Filled Teeth in Behçet's Patients

[BD patients have more decayed, missing and filled teeth than people who don't have BD]

Vildan Erdem et al. Balkan Med J. 2013 Jun.

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

(4) The close association between dental and periodontal [gum] treatments and oral ulcer course in Behcet's disease

[This article is for BDers who've put off getting their teeth cleaned because it would always make their mouth flare up afterwards. Dental treatments like cleanings and periodontal (gum) treatments may be linked with flares of oral ulcers in the short term, but the longer you keep up with brushing, flossing, and seeing your dentist for cleanings, the fewer oral ulcers you'll have in the long term after dental treatments]

doi.org/10.1111/j.1600-0714...

(5) Periodontal health status among patients with Behcet's disease.

[There's a strong link between gum problems -- bleeding when your dentist probes your gums, how deep in your gums a probe is able to go, and how badly your gums have pulled away from your teeth -- and how severe your BD is]

doi.org/10.1155/2016/7506041

Hope these articles help!

Hang in there.

Joanne Z.

Morning Sorry to hear about your situation. Prior to being diagnosed - in the early 90’s one of my symptoms was developing an excessive amount of mouth ulcers to the point I could only eat porridge and drink water so very similar but I guess as I drank water and you drank coke your teeth have unfortunately decayed with the drinking of coke. Thankfully I didn’t suffer any long term issues with my teeth. I’m sure your Dentist is the only person to give the best advice about treatment. Good luck with moving forward 🤗

PS- I just read your previous post about whitening your teeth - maybe not a good idea given the problems you have 😳

paige1991 profile image
paige1991 in reply to Juliauk10

That’s from about 9 year ago

Juliauk10 profile image
Juliauk10 in reply to paige1991

Definitely not what your previous post suggests - for several years you choose to drink coke & strawberry milk and you also choose to whiten your teeth at home including using peroxide - several years later your teeth have understandably decayed and you want the NHS to fund your dental work - seriously 😳

I feel you 🤗 My back teeth actually started to crumble during both of my pregnancies, (18 & 13 years ago) my fillings would just fall out!over the last 5 years, I've given up counting the amount of reoccurring abscesses I've had/ have. Now my gums at the front seem to be rapidly receeding & my front teeth are pushing/sticking out?! & my two front teeth now have a really long appearance :( like you I don't smile much, certainly not on photos & am very conscious if someone or something makes me laugh. I can't afford to have them fixed ie straightened & whitening, I would really love them to be filed down & capped ♡ I feel like I'm still too young to have a set of dentures at 48 although I have indeed considered this option, as that's how desperate I want them fixed. Every dental visit, there always seems to be 1 problem to fix before I have any cosmetic procedure, its the same sad story each time & have had to cancel & reschedule endless appointments as my Dentist won't touch my mouth when I have ulcers or until I've finished the course of antibiotics for the abscesses :( I too want to smile in photos, at people & openly laugh again..Apologies if I haven't any advice to give, but I wanted to let you know you're not alone 🤗 & Thankyou for posting ,as I now don't feel so alone with these problems also 🌻

ps Thankyou Jzeis for the articles :)

I have had the same problems. I was diagnosed 2 1/2 years ago but I’m sure I’ve had Behcet’s for at least 30 years. I didn’t have insurance and couldn’t afford to see a dentist. I had terrible problems with my mouth and teeth. I know the pain you’re in. I had all of my teeth except 6 removed and have dentures. I’m still having problems because the dentures dig into the mouth sores. I would check into getting implants if I were you because the pain is excruciating enough just having the sores but having dentures on top of them feels like someone is jabbing a toothpick into the sores. I was on Colchicine which really helped but then my liver couldn’t handle it and my enzymes wouldn’t come down until quite awhile after discontinuing taking it. I was without medicine for 2 years and I just started taking Otezla and I’m really hoping that helps. I hope you find relief. Nobody understands how painful this disease is. My joints are affected by it too and there are days when I can barely walk or use my hands.

paige1991 profile image
paige1991 in reply to KittyMama1

I’ve already looked into implants it’s gonna cost over £19000 that’s why I need help from the nhs I just can’t afford that right now

gillianTS profile image
gillianTS in reply to paige1991

Ask for a referral to to an NHS dental hospital, my dentist referred me it took a while for the appointment.

My dentist recommended GC toothpaste for me and advised cheaper to buy elsewhere than through him, I only use it when I have a problem in mouth splint, seems to help but I have nothing like you are experiencing. I really would encourage you to please try and stop the Coca-Cola it really really truly is not doing just your teeth and oral cavity no good but boy is it going to be causing a possible problems inside which you are just not seeing, your teeth are at the front end and all you can see. Any kind of reflux, gasses etc will always have a huge impact on your body but also your teeth. My nephew has only 12 teeth left now, similar situation, massive ulcers, continued antibiotics, massive gastric problems including throat, teeth breaking, crumbling, in a horrendous way.

Hope you find some way out of this it sounds not a great place, have you considered a change in dentist or asking for a referral to a dental hospital.

paige1991 profile image
paige1991 in reply to gillianTS

Ok I want to explain I don’t choose the coke but sometimes it’s the only thing I can swallow and I am including my own saliva in that that’s why I had to drink coke I tried water and everything else

KittyMama1 profile image
KittyMama1 in reply to paige1991

I understand. It’s probably because of the GI problems that some of us get with Behcet’s. Cola IS bad for the teeth but to be honest I’m not a soda drinker and I had so many cavities and 9 root canals and gum surgery and I took the best care of my teeth that I that I could. I feel for you. I went to a naturopathic dentist who tested me for allergies (I have severe metal allergies) before we knew I had Behcet’s (I never went to the dentist when I had the ulcers because I couldn’t bear the thought of the pain of having them prodded and didn’t know there was actually a disease that caused them) and they told me that the only thing I could handle was porcelain (17 years ago) and they cost $7,000 back them for partials. When I had to have 6 more teeth pulled I went to a regular dentist and I’m miserable with the dentures they made. See if you can find a naturopathic dentist. They are more likely to take you seriously from my experience. Be warned tho. I had 42 mouth ulcers after I had a bunch of teeth removed. It was aweful but I felt so much better after they were out of my mouth. I had been nearly completely bedbound for 12 years and when those teeth came out i was no longer so sick that I couldn’t get out of bed. I know how hard it is financially. It took many years to pay that off but my life was much better. I still had a lot of problems but being stuck in bed while I had 3 little kids was torture. I hope you can get some help.

I appreciate your recommendation of a Natiropathic dentist. I shall find one!

LotiRamjet profile image
LotiRamjet in reply to gillianTS

I so relate to dental issues caused by Behçet’s. It took me some time to find toothpaste that I could actually brush with that didn’t contain mint, which I have designated as evil due to the burning it causes. I don’t know if the burning tongue is related to Behçet’s, but it is part of it all for me. I was finally able to find toothpaste that has fluoride in it but not mint - one is blueberry flavored and the other is bubble gum flavored. Neither have sugar! I still have dental pain, and need to go back to the dentist to see what is next. I would truly love to get implants but I definitely don’t have the money for that so I suffer with pain while eating in the meantime. My bones in my mouth and my teeth hurt so much it is hard to eat - which is such a lovely addition to the pain caused by the Aphthous ulcers! There are still times when I just can’t brush, but I’m not so hard on myself about it now. I’m in search of a dentist who has experience with autoimmune disorders and I hope I find someone soon. With all of the other doctor appointments I have, adding dental visits back in will be challenging.

gillianTS profile image
gillianTS in reply to LotiRamjet

Hi LotiRamjet

I use GC toothpaste for sensitivity, especially at gumline, they do this in different flavours and I only use it to try and stop sensitivity after usual brushing, I apply with my finger or a small cotton bud and use my mouth splints to help, especially at night.

I also wanted to reply to your comment regards to burning tongue, I too have this, it also affects the roof of my mouth but I feel this is because my tongue sits resting there when my mouth is closed. Nobody ever listened or gave me anything to try and then I discovered it actually is an issue and not just me, it's called burning mouth syndrome, you can read about it here:

maaom.memberclicks.net/inde...

Hi Paige as you can see everyone feels for you and has experienced something similar in the way of symptoms. In my case it is the receding gums - I’m due for some expensive work this coming week. I’m just curious as to why Coca Cola was/is the only thing you can get down in a flare? Hopefully you can find an alternative. BD is a very difficult disease to manage and there has to be a lot of give and take on our parts - just makes us all pretty tough and determined people! On the Vasculitis UK website there is at least one retired dentist and if you put a copy of your post up there, hopefully someone will contact you. That’s what happened to me years ago.

paige1991 profile image
paige1991 in reply to lesleyg

Coke is the only thing I can swallow when I’m bad and that’s including my own saliva I tried everything else that’s the only thing that didn’t hurt and thanks for the idea for the vasculitis is website I’m gonna do that now

Are you under the care of a Behçet’s Centre of Excellence? If they could get your Behçet’s disease under control so that you can eat and drink, that would reduce ongoing damage to your teeth and gums, then allow you to decide future options. I had times prior to my diagnosis when I could only drink boiled water, slightly cooled, as I was in such pain with mouth and throat ulcers. Then there would be a window of opportunity where my mouth would be “numb enough” to swallow proper food without choking. I wonder if the bubbles in the Coke somehow relieve the pain of the ulcers for you? I also discovered Difflam spray to numb mouth ulcers and Anbesol and later a stronger anaesthetic spray and they became survival tools but were not long-term ways to manage. So I completely get that you stuck with what once worked, but sadly are now suffering the consequences with tooth decay.

I use high fluoride toothpaste (Duraphat available on prescription), electric toothbrush, interdental brushes, floss, have regular hygienist appts and dental checkups but still had abcesses and failed root canals and frustratingly lost teeth so agree there is something different about Behçet’s patients, maybe the saliva or enzymes not destroying bacteria or something.

I doubt dental implants will be an option on the NHS so you are probably limited to maintaining what is there (if it breaks, dentist does short-term fix) or multiple extractions and dentures. Getting an opinion from a specialist would be wise, either in Oral Medicine or a dental hospital rather than the high street dentist repeatedly patching things up. I wonder if dental hospital would also have links to psychology dept who can address the secondary issues (anxiety and low mood) caused by the decay and also the pain issues. Good to reach out for advice and try to break the cycle you are stuck in

paige1991 profile image
paige1991 in reply to Legomum

The thing is if I had destroyed my teeth with drugs or something the nhs would replace them I know I guy who ruined his using either cocaine or something else and he had all of his replaced it’s just not fair and I have an appointment with the Behçet’s centre but it’s been rearranged 4 times now due to covid and I think it was the bubbles too but other fizzy drinks didn’t work for whatever reason. thank you for the reply

Legomum profile image
Legomum in reply to paige1991

That’s good to know there will be a Behcet’s appt in the future though, for some expert advice and true understanding of all the issues. Will also allow you access to their psychologist too

Juliauk10 profile image
Juliauk10 in reply to paige1991

You can’t expect the NHS to financially fund your dentistry when you chose to drink Coke & whiten your teeth - I completely understand your predicament but let’s have some reality here guys

paige1991 profile image
paige1991 in reply to Juliauk10

I didn’t choose to drink coke it was all I could swallow including my own saliva I tried everything else and I do mean everything hot and cold included and I whitened my teeth once also I’m not asking them to fund it I just need helping you’ve got nothing useful don’t reply

Juliauk10 profile image
Juliauk10 in reply to paige1991

Posts like yours need a reality check response - you drank coke & strawberry milk out of choice - the NHS is funded by Tax Payers and I for one am not prepared to pay for your poor choices - take responsibility and pay for your own dental work 🙄

paige1991 profile image
paige1991 in reply to Juliauk10

Do u have Behçet’s disease??

Juliauk10 profile image
Juliauk10 in reply to paige1991

Yes and I also take responsibility for my own actions 🙄

JollyHS profile image
JollyHS in reply to Juliauk10

Let's be honest, Behcets Disease is a crappy illness, sometimes it makes me irritable and I find it hard to not be critical of others (especially my long suffering husband, poor man!) but I always think of this group is a place where I can find education, encouragement and even a sanctuary..... Looking at the other posts here about dental health it seems that Behcets sufferers teeth can decay whatever we might eat or drink. It took me a very long time to realise how my dental health was connected to my illness, my cleaning routine is now a big part of my day but it wasn't always, I just brushed twice a day like most. Now I spend 10 minutes two or three times a day, with interdental brushes etc.. I can remember a time when I found it difficult to swallow water. I have reflux at the moment causing a lump in my throat, very little seems to help that. I drink boiled water (drink it warm but not hot) with a little honey (I put ginger in mine too but that's for the reflux), I find the honey makes it easier to swallow. It's certainly better than cold water for me. I would persevere Paige1991 and try to find something better than coke. I am really careful with what I eat generally, a good healthy diet (which isn't always easy with Behcets), but drinks I do find difficult. I've read so many posts here where BD'ers have said that what they eat causes flares, I think I'm right in thinking that carbs and sugar are a real trigger for some. It's possible that the coke is causing symptom cycle: coke equals inflammation - meaning you can't swallow - so you drink coke - which causes more inflammation..... Anyway... Here's hoping today is a good day. xx

Juliauk10 profile image
Juliauk10 in reply to JollyHS

Sorry to hear that you have issues with irritability. I too definitely used to find this forum as a place of education, encouragement and support. I also agree that there are many health conditions that sadly have a detrimental effect upon dental health. Sadly, the post you are referring to is not such a case. The poster stated that during a period of having mouth issues, she drank coke, strawberry milk and used several home teeth whitening products including peroxide. Understandably her teeth have now decayed and she is obviously unhappy that the NHS will most likely not fund her dental work of implants even though she points out that the NHS do in fact fund such works for drug addicts. I was bought up with a strong sense of moral integrity and would not dream of using my health condition to gain financially. However, if you believe that it is acceptable for someone to cause such decay to their own teeth but later blame it on their health condition in attempt to gain free dental implants then maybe you could assist the poster with the thousands of pounds for her dental treatment.

Are you able to “lock” your post so only visible within the Behçet’s community (not via Google searches etc)? There was a pinned post from Behçet’s UK about how to do that as I think you may get more replies and advice that way too. The post was called “Restricting your post to our Community”

paige1991 profile image
paige1991 in reply to Legomum

I can’t find that one but I think I’d rather more people were able to see it or maybe I’d get more replies if it was I don’t know really

JollyHS profile image
JollyHS in reply to paige1991

I think you will get more replies by locking the post to the community, certainly replies that are helpful to you. If the post isn't locked anyone and everyone can see the post and the replies, and with Behcets symptoms being often quite personal I'd say that lots of sufferers don't want to share their experiences with the world. Anyone can join here so it's not as if by locking you are hiding information just not opening it up to the rest of the world. :)

When you log on to Health unlocked down the bottom of the page are various options. One of these is communities. Click on this and again one of the options is Vasculitis UK. (Behçet’s Disease is a type of Vasculitis). Hope this helps.

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