Dental Problems with Behçet’s : Please take... - Vasculitis UK

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Dental Problems with Behçet’s

paige1991
paige1991

Please take the time to read I know this is a long post but I really need help.

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 was able to swallow was Coca Cola and I am including my own saliva in that, it was literally only coke I could get down even though I never touched the stuff before I was 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 and because of the embarrassment I 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 the 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 them too and I want to make it clear that I do brush my teeth and stuff now I take care of them they way they should be but it still keeps getting worse. This 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 but I’m only 29 so I can’t have dentures at my age and if I had dentures I know they’d hurt when my mouth flares up again and my dentist keeps saying that I just have to wait until they completely break down and try to keep mine but on top of all 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 I can’t keep going back to my dentist for her to give me more fillings I was there last week and she told me I need another 8 fillings despite what I’m doing to take care of them and believe me when I say I’m doing everything I can myself to help them it’s just never enough.

I just want my straight while smile back so much that I’m actually crying while writing this.

Please Help

I can’t live like this anymore.

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12 Replies

Do u have Behçet’s disease??

This seems very harsh . Our illness and genetics must play a part.

Will do .i am no expert . I had a lot of dental treatment, very expensive . I felt very responsible and guilty,thinking I had been neglectful. Diagnosed since .

Are you in the UK? If so you need to be seen at a bechet centre who will fully understand. There is a special dental hospital in London. Call the vasculitis uk helpline today.

paige1991
paige1991 in reply to AmyS1

I’ve had my appointment cancelled 4 times due to covid but I’m just waiting for it to be rearranged now

Did you try diet coke? Should be quite similar to tolerate, but without all the sugar.

paige1991
paige1991 in reply to NYinLON

I did when I say I tried everything else I mean everything I don’t know why it was only that but it just was and its not like I still drink it now I do everything I need to to take care of them now it just doesn’t seem to make a difference

Do not try to get this resolved at a local dentist. Bechets is serious and complex I think that you genuinely need to be seen at a specialist clinic and also a specialist dental hospital.

Seriously - have you ever had literally a mouthful of enormous, unbearably painful ulcers, so severe that you cannot eat or drink and had to be fed through a tube? I suggest that, until you have, you don’t make such stupid and offensive comments. From another Behçets sufferer.

John_Mills
John_MillsAdministrator

I do not have Behçets but I do have another type of vasculitis. I do understand the problems this dreadful disease causes. I was a NHS dentist for 40 years before I retired. I am afraid Coca Cola is a terrible drink and as a dentist I think it should be banned. It contains phosphoric acid which dissolves the enamel of the teeth. Once the enamel has gone it exposes the dentine which is relatively soft and spongy, is yellow in colour, absorbs stains and decays very quickly.

The only solution is to have multiple crowns or implants. Both of these procedures are very expensive and implants are not available on the NHS.

Finding to dentist who is willing to provide multiple crowns on the NHS will be very difficult.

Crowns and implants soon fail unless there is a regime of scrupulous oral hygiene and certainly no carbonated drinks, especially coke , diet or full fat.

The lead professor at the London Behçets clinic qualified as a dentist , she maybe able to offer advice.

If you live near a teaching hospital with a dental school it is possible that you maybe able to have your crowns provided free as dental students need patients to train on.

Julia’s comments were unkind and harsh but I am afraid your dental problems were self inflicted.

paige1991
paige1991 in reply to John_Mills

Ok I do know that I’m not stupid I know this is my fault but it was my only choice at the time I don’t drink it now I only drink normal or flavoured water I don’t drink hot drinks and I don’t do fizzy drinks anymore that’s why I don’t understand why they’re still getting worse

John_Mills
John_MillsAdministrator in reply to paige1991

The damage is done, sadly

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