teeth

[scottty]

i just back from the denist and had 3 teeth out now i have know bottom teeth i keep telling the denntist to take them all out x

[Purpletop]

Please reconsider taking all your natural teeth out, no man made alternative is as strong and comfortable to eat with than your teeth, not even implants. Why would you want to take them out?

[scottty]

thay are breaking apart i stillgot all my teeth at the top its the bottom set which i havvve allthe problems with

[Pixers in reply to scottty]

I'm going through the same problems right now, almost all my entire top teeth have shattered and the bottom are joining. So much pain, and with being on enbrel, methotrexate and prednisone, everything will break.

[mummyswift]

Hi Scotty, do you know if your problem is lupus related? I have had earache for some time now. After 3 courses of antibiotics, trip to a & e at hospital and an appointment with an ent consultant turns out I have arthiritis of the jaw bone. Next trip to the dentist, who says my jaw bone "wearin away" too and confirms the arthiritis. They have both said this is prob lupus related. To say I'm in agony is an understatement. I know what u going through, as pain in your head/mouth is so unbearable.

I was diagnosed with sle about 18 months ago after having symptoms for about five years. Since being diagnosed, I feel as though I am constantly getting worse. I suffer with extreme fatigue, my joints swell to the extreme where I cannot walk. As a child I developed scoliosis which I know have s secondary curve (waiting on surgery). I have costochondritis through the whole of my left side and now my jaw. I spend most of the time at home, as I struggle breathing when try to walk.

Somedays I feel like this illness is just travelling through me so quickly and draining any energy I have.

Has anybody else experienced similar problems, can you offer advice.

Sorry for moaning and thank you for reading xxxx

[rockchic in reply to mummyswift]

i know exactly what your going through concerning your jaw and ear. i was having what i thoght was constant earache and face and jaw pain ,i even had a grommit fitted 3 years ago to see if it would help, but that only made my symptoms worse and i ended up with meniere type symptoms,i saw 5 ent specialists and not one of them had thought to link my symptoms with my lupus. in the end i got so depressed and suicidal because of the chromic pain , then one day i came across a site about tmjd and realised thats prob what i had , its a very complex condition thats related to bones and muscles in the skull,and what happens is they stop working together in synergy and thats when the problems start , to cut a long story short i did not get much help from the tmj specialists at the hospital ,who basically told me i had got to learn to live with it. after scouring the internet for months trying to find help i came across a dentist in america who treats the condition he emailed me the only dentist in england who offers this tretment . i went to see him last year , i had ct and mri scans done privately and found out i had got severe arthritis in my jaw caused by lupus and that my muscles in my face were in overdrive adding to my symptoms, he said he could get me at least 65% better if i decided have the treatment, the only stumbling block was the cost VERY VERY EXPENSIVE ! after a few weeks deliberating i decided to go for it , and its the best thing i ever did i now have pain free days , and my other symptoms have decreased considerably , i still have bad days but overall it was so worth it , the tmj doc at the hosptal seems to think its some kind of fluke and that the symptoms would have eased by themselves eventually even though i had been suffering for over 4 years with no let up ! i even took my private scans to show him that i had severe arthritis in my jaw and that far from getting better i would have got worse ( he had refused to do any scans as he thought my jaw was ok) needless to say i wont be seeing him again. life is hard enough living with lupus and all it brings without having docs who think some things are in your head or you exagerate your symptoms.

[vanysol in reply to rockchic]

Reading this sounded so much like me a few years ago. I was diagnosed at 20, I'm going to be 27 next month. It has been a tough journey the medication helps, but you have to learn to be your own doctor, this condition changes a lot from person to person you will learn to know what make u well and what doesn't. I now have 2 small children, I've recently become single as my partner could not cope with stress. I work 6 days a week running 3 businesses. But up until 3 years ago I was so weak I couldn't even care for myself let alone 2 children. I still get tired but when I feel my body needs a rest I stop but not too long just enough to regain some energy. I try to exercise at least once a week, sometimes I manage 3 days. Try to keep yourself busy energy generates energy.

[Nanuuk]

Do you have sjogrens? I only ask cos after years of drilling & filling to the point they cant anymore my dentist said the lack of saliva in my mouth is whats causing the decay & prescribed tripple the flouride toothpaste!

[Lorelei in reply to Nanuuk]

This is the exact reply I was scrolling down to write in.

I am a dentist and have lupus myself. I don't have Sjogren's Syndrome. Even so I find that my mouth is extremely dry now. Lack of saliva most certainly does increase the likelihood of developing dental decay. I would recommend using any of several products with the brand name Biotene. The best product is a gel that you apply to the gumline just before bedtime. Biotene also makes a mouth rinse, a toothpaste and a chewing gum. All of these have an ingredient which causes your salivary glands to produce more of your own natural saliva.

I do hope that the Biotene products are available in the UK. I live in the States and am not sure where else they are sold. There may be a way to buy the products online and have them shipped internationally...or they may be marketed under a different name in other countries.

Please don't consider having anymore teeth removed before consulting a couple of new dentists, Scotty!

[NickyB]

Please don't take your teeth out. You may find you still have pain there like me. I have spent 1000s on dentistry to realise its the hypersentive nerves caused by lupus/fibro. I now have a fantastic dentist who knows about autoimmune problems & teeth. She is now fixing all the mess that other dentists have caused. The worst damage was done when I was 15! They couldn't figure why I was in pain. We know now

[imran]

Hi Scotty ,

My wife's teeth are also decaying , its because of Sjogern , First the Sjogern was diaganosed and Sle was diaganosed after this(about 2 and haflf years ago) ,Lot of her teeth are out now , and further are decaying due to Sle .The dryness of sliva is under control now but the process is continuing.NickyB is right we need a dentist who understands the autoimmune problem well , otherwise lot of dentists will simply remove the teeth as puss develops under the root and it creates lot of problem/swelling.Although after removing and fixing new teeth they also are affected by sle and creates probem after 1 or 2 years .

[tiredmum]

Scotty, just to let you know you can get Biotene gel on prescription.

Also ask to be referred to the maxial facial department.

I also suffer from crumbling teeth and my dentist "kindly offered" me over £4000 of treatment. I went to max fax and he told me that my teeth wouldn't hold any kind of treatment - crowns etc and just to have fillings and patch up jobs.

He also suggested flouride mouthwash and flossing.

I fully sympathise with you.

good luck x x x

[chrisj]

To Lorelei....yes we can buy Biotene here..

I use BioXtra, prescribed by the dental hospital....toothpaste and mouthwash, and I get little pastilles/gums that help with the saliva loss as well as gel and sprays. I've had 2 teeth out so far thanks to Sjogrens and one ready for extraction any time soon, they've just crumbled I have SLE as well but I'm told its the Sjogrens thats causing the mouth problems..

[MsLifeSavor]

U don't want them all out. Believe me...all my top r out, I just turnedc37, n its not fun. Had em out since 34. Its crazy.