LUPUS AND TEETH

[max1979]

Hi Lupus community,

I just want to know if anyone has lost teeth or had teeth problems caused by sle or the meds?

[kirby66]

yes unfortunately my teeth just keep breaking eating is a constant nightmare

[max1979]

i even take adcal 10 (vitamin d) same as the sun but can stop the inevitable - went to one dentist who told me i was eating too many sweets and needed to learn how to brush properly so i complained to the health board of dentists and got an apology - youll find that alot of dentists have never heard of lupus.

[Cann in reply to max1979]

You can't win because I have loads of food allergies and I think I eat quite a healthy diet, but my dentist says it's my diet causing the teeth problems and if I could eat normally, my teeth would be OK. I know this is not so - if I ate normally I'd be dead. Some dentists won't treat patients with Lupus, so I don't say too much as I don't want her to refuse to treat me. She has had to put up with a lot as I can only have one extraction at a time and even then I have bled all night and can't tolerate stitching/material either.

[Gadyal in reply to Cann]

My teeth came out from root doesn't hurt just embarrassed

[scottty]

I had a lot of problems with

My teeth it's got to the stage where my teeth is breaking away I have a set off false

It got to the stage I was there everyweek at the dentist

[Cann in reply to scottty]

I'm heading that way, but putting off the dreaded day in case I react to wearing the plate as I react to dental chemicals - how do you get on with it? It would be good to know someone who gets on fine as I have read so many bad stories about dentures.

[max1979]

i understand i have been there too and stopped going the dentist because they would just keep telling me it was because i wasnt brushing properly or eating too many sweets.

[stretch in reply to max1979]

hey max,i only read something recently that dentists should be told if a patient has lupus. i can't recall what they do differently,but dental work and any injections might cause flare. all the best mate.

[Cann in reply to stretch]

I've told my dentist, but she still tells me I must clean my teeth more often and better. I find it frustrating and just rubbing salt in the wound. I remind her every time not to give me scandonest as I went unconscious with that, but any anaesthetic causes a flare - rashes, exhaustion, morbid feelings, etc. They see so many patients that it is difficult for them to remember and unless you suffer yourself it is just impossible to understand; we have to keep reminding them all the time.

[LupieWarrior4951 in reply to stretch]

I am given a big dose of Antibiotics pre same post treatment. A healthy mouth is related to your overall health. They want to prevent infection, which must of us have trouble fighting. I'm also a tooth grinder do it adds fuel to the fire. An informed dentist will know what lupus is and they will know how to treat you. I get cleanings at a clinic and my regular dentist has been giving me crowns lately. They're only breaking in teeth that have old silver fillings. Perhaps something related to the old filling material and us, because we develop intolerances overnight, and the breakage. I brush and floss. I don't have any periodontal disease or receding gums. I'm 49. Listerine had been my friend since I was 15, which is about the age they feel symptoms started. I went undiagnosed for over 20 years. I'm a big fan of wearing masks and I love hand sanitizer. The last part was for the vacationers. Masks in crowded areas are a good idea. These always someone with some bug, and they always want to talk to you or cough and sneeze in your direction. Take care all and have fun when you can.

[roobarb]

It's awful that you've all had these experiences. Dentists should be aware of the risk of dry mouth with SLE, & the possibility of cross over with Sjogrens syndrome. Unfortunately many meds can cause dry mouth too. So the teeth are no longer protected by the saliva & become weak & prone to decay.

Your dentist can recommend high strength Fluoride toothpaste (prescription only) & other products too. You should be seeing a dentist more frequently because of this, & possibly a hygienist too, in order to spot problems early & prevent further tooth loss or damage. But who would want to see someone who gives them a lecture!

Try to find a dentist who is more understanding, perhaps speak to fellow lupies in your area & see who they recommend.

Best wishes. X

[Tigerlily4]

To my personal knowledge, steroids can affect gums (often making them "mushy" and prone to receding more quickly) and any drug that causes a dry mouth and/or Sjogrens will also affect your gums and dental health, as Roobarb mentions above. Taking Adcal daily is a very good idea, especially when taking steroids, as are flouride replacing toothpastes (the Oral B one is particularly good), but rinsing after brushing with Flouriguard mouthwash has been my saviour. Hope that helps!

[Cann in reply to Tigerlily4]

Steroids do a lot of damage to the body if taken long term. I wouldn't touch anything with fluoride - my dentist swears by it, but it is no good having good teeth if the liver and kidneys suffer. Dr. Mercola does some good emails about fluoride and I am sure it is on his web-site, too.

[max1979]

Thanks to everyone who answered my question.

[RhondaB]

Hi. All you guys are right. Dentist know very little. I had perfect teeth, then 2 yrs before I was diagnosed with lupus I start having problms wih my teeth. Not cavaties or anything, they were loose, you could actually wiggle them. My Dentist asked me if I was HIV. I had been seeing him for 7 yrs. He couldnt understand why every month I had another loose tooth (lupus effects the bones and this include those in your mouth). My reumy sent him a letter explaining a lil about lupus and ask that he (dentist) get with him before he do any procedure to my mouth just for caution (Love my reumy). I eventually ended up with a upper plate and not to many left on the bottom.

[Tigerlily4 in reply to RhondaB]

My Rheumatologist refuses to accept that lupus and/or the drugs I take have any bearing on dental health ... rolls eyes ... even though I've known for years they definitely do and have met many lupies with missing teeth. Must tell him about this thread!

[RhondaB in reply to Tigerlily4]

Hey Tigerlily4, Hope all is well. I get the Lupus Magazine from the Lupus foundation and there was a story in there where a lady's dentist actually told her he thought she may have lupus because of her mouth issues and should be tested and sure enought she lad lupus and a friend on mines recently went to the emergency room for chest pain and the doctor there told her her pain was due to the barametric (hope i spelled that right) outside, that he had seen anout 20 luus patients with the same issue that day and the he is ashamed that not many doctors are familure with Lupus.

[tiredmum]

I asked a similar question a while ago. I have finally found a dentist who is amazing.

She is so understanding explaining that the state of my teeth is not my fault.

she advised me to carry a bottle of water at all times and to sip it regularly, to use a flouride mouthwash and most importantly to floss.

you can also get a biotene gel on prescription if your mouth is really dry.

[ebril]

My teeth ate falling out at the moment I do have a dentist that knows about Lupus but worried about taking them out because I have very bad anemia and I may have a problem with clotting it not clotting can't remember which one she said so I have reall misplaced wonky teeth at the moment and would quite happily have them all removed

[JJKANE]

yes my teeth were my pride and joy and then Lupus took them away one by one... I have sjorgens as well which doesnt help ... never mind there are always falseies , I have given up crying over a lost tooth,

[tiggergirl]

Mine are really bad, but my dentist tells me i need to bite with the back teeth but you need to bite with your front teeth then eat with back teeth, i got false teeth at the back but when eating it don't feel right, even with them in my front teeth still chip away i hate it make you not want to smile they look horrible

[Homeandaway]

Hi guys and gals my teeth are awful now too, lupus makes my eyes water when I brush my teeth, have tried lots of different toothpaste my tongue is very sensitive any suggestions? Tks xx

[else5]

hiya all yes i have the same trouble with teeth i at to have all my pull out to because of lupus it just made all my teeth very loose could pull them out one by one now i have dentures and hate them still get dry mouth. all the best everyone xx

[tulip47]

Hi all, afraid I am also losing all my teeth.....bottom ones just falling out, top ones more of a problem. Frequently advised to take more care with teeth cleaning, if only that would work!!!

Have been advised to use Bio-tene toothpaste and mouth gel (very expensive) no prescription available!

Wish you all well xx

[Nightjar]

Hi Max, Before I started taking Co-Enzyme Q10, I had lost a couple of teeth and had several that I feared could come out 'during the next meal.' Since then my teeth and gums have improved a lot - several loose teeth are no longer 'on the move' and I hardly ever have any mouth/nose ulcers. When I do, they heal quickly - never develop into painful 'blobs' as in the past. It was found during research by dentists (ME patients with mouth and gum problems - sorry, don't remember when ..several years ago, a dentists' magazine), that the Q10 also helped with fatigue. I take 60mg daily as recommended in that research. Hope you find something to help you. xxx

[Taweet in reply to Nightjar]

Nightjar Hi, I was very interested in your post-exactly the same has been happening to me-have at last count two more very "mobile" teeth-am ongoing with a hygienist,and seems to more brushing and using tepe interdental brushes than anything else-to no avail-I get so despondent. I have ordered some co-enzyme Q10. How long does it take before you see a difference ? I am almost desperate !

[Nightjar in reply to Taweet]

Sorry Taweet, for such late response ..just found this posting again - after it got filed away by mistake. If you have started taking the Q10 by now, you may have already noticed a slight change. People react differently, so can't say how long it would take in your case. I personally react very quickly to 'everything.' I hope you are less desperate by now or will be ..soon. Good luck! xxx

[Taweet in reply to Nightjar]

Thanks Nightjar for replying. I have been on the tabs for about 3 weeks now and found that my Lupus has gone crazy,so many joint pains etc. I have also discovered that it Boosts the Immune system ! I don't think this is doing me much good. So glad you have had good results and that it has made a positive effect for you. I'll have to hang in here with the loosening teeth rather Take care

[Nightjar in reply to Taweet]

Hi Taweet,

Where did you learn that Q10 Boosts the immune system? I have checked various information but haven't found it on the internet. I can't take Echinacea (A herb which boosts the immune system.), as it gives me flu symptoms - but have never had any adverse reactions to Q10 ..quite the opposite, so was surprised to hear that it 'Boosts the immune system.' What Q10 does for me is preventing gum disease, mouth/nose etc ulcers and keeps the fatigue at bay.

Some info from google with my comments in CAPS:

1) "Coenzyme Q10 is present naturally in the body, and is also found in certain foods. It acts as an antioxidant, and plays a role in protein synthesis and healthy muscle activity.

Coenzyme Q10 is also available as a dietary supplement, and has been studied for a number of conditions, including heart disease, high blood pressure and periodontal disease.."

2 ) "Coenzyme Q10 is present in the body at the cellular level. It participates in the production of a substance called ATP, or adenosine phosphate, which fuels cell function. According to MayoClinic.com, your cells cannot function without it. Coenzyme Q10, also called CoQ10, is thought to be an energy booster (THIS IS NOT THE SAME AS BOOSTING THE IMMUNE SYSTEM), and also plays a role in your immune system's function (FUNCTION - NOT BOOSTING..). While you can take supplements to increase your CoQ10 levels, you can also increase your body's natural levels by eating foods rich in the nutrient. These include oily fish and whole grains.

Read more: livestrong.com/article/5068...

3) "Coenzyme Q-10 (CoQ-10) is a naturally occurring substance in the human body. It is essential in the production of energy. CoQ-10 levels decrease with age and with certain medical conditions. It is proving useful in treating numerous conditions,.."

4) " Coenzyme Q10 is normally used as a supplementation in people who have certain medical conditions, such as heart conditions. It is also used to treat certain mitochondrial (SO SHOULD BE GOOD FOR LUPIES) conditions."

5) "Coenzyme Q10 is an oil-soluble, vitamin-like substance. Its working depends on how it is used. It acts as a catalyst (CATALYST ..NOT BOOSTER) and converts food and supplements into energy, prevents the production of harmful free radicals released by cells at times of stress hence preventing heart diseases and slowing aging by supporting immune functioning."

It all sounds so good - what a pity Q10 doesn't do anything for you. Hope you find a solution. xxx

[Taweet in reply to Nightjar]

Nightjar Hi, I googled "Coenzyme Q10 and immune system" and it came up with an article :Coenzyme Q10 boosts immune system, energy levels-(this is the heading of the article)

But ! on re-reading further this is what it says-seems to contradict itself in that bolstering is not the same as boosting,is it?

Coenzyme Q also bolsters the immune system and improves immune function in HIV/AIDS patients, increases energy levels, promotes weight loss, and enhances gum health. It has also been shown to be beneficial in chronic fatigue syndrome and several neurodegenerative disorders, including Alzheimer's disease, Parkinson's disease, and Huntington's disease."

Perhaps I overreacted and was too quick to condemn? It was posted not on a medical/health sight but an Asian newspaper,and perhaps,with all due respect, this is the difference.

I think I will give it another go and persevere.Thank you Nightjar for your time and for taking such an interest xxx

[Nightjar in reply to Taweet]

Best of luck this time Taweet ..I'm still taking my 60mg daily Q10. xxx

[stretch]

i had sore gum against the rear lower tooth...it was very odd feeling...after several hours my tongue felt something jagged there....the top half of that big tooth had dissolved away !!! :- 0

frightening that was! however that is the only problem so far and reading how others on here have lost their teeth,i see myself as being fortunate :- )

[lennox]

I was told by the dentist that due to medication this changes the sliver in the mouth which can lead to problems with teeth I have had 2 teeth out within a year of each other, and have become so sensitive,

[dianeInFV]

I realize there is no medical literature that supports a connection between SLE and teeth. I'm also familiar with the mouth ulcers, Sjogrens, and the effects of Prednisone. Having said that, there isn't anyone on the face of this earth that could convince me that there isn't some connection between my dental problems (Teeth) and SLE. I just came home from the dentist about an hour ago. I had my second broken tooth repaired. I have never, ever, had dental problems like I've had in the past 10 years since I was diagnosed. Mark my words, one day researchers will find that there really is a correlation between the two and all of us aren't crazy after all.

[Whathappned in reply to dianeInFV]

I was having similar problems with breaking teeth. I started on Hydroxy and it all improved. I didn't get rid of the dry often sore tongue but the teeth have not broke since. Keeping fingers crossed. I keep on my sugar free chewing gum and sweets but they don't help the stomach problems x

[2dogs]

I feel an advantage here, I have a great dentist. He is very aware of all my auto-immune conditions and is totally in my corner. I can't have any topical in my mouth ( it blisters my skin, and gift from Sjogrens). Although I didn't start out this way. Its taken me years to find a good group of medical/internist/dental professionals in my area. And I have driven up to 2 hrs one way to find a decent "knowledgeable" doctor. I get ulcers in mouth so bad, it actually extends outside my mouth to my lower lip. I have no back teeth on the bottom. As I said... it took me a awhile to find the right people. Hey... whats that commercial? "I have people!"

[Lucyricky]

My daughter has lupus and her teeth are literally falling out of her head the doctors and dentist have suggested to have all her of her teeth extracted. Has anybody going through this I don’t know how much trauma this will make and I am concerned about whatever reaction she may have does anybody have any type of advice on how to extract the teeth are how many at a time or any experience with this at all ?

[SLE72]

Yes definitely. My teeth are breaking . I was told by dentist that due to years of dry mouth my teeth are brittle. I use Biotene toothpaste & mouthwash. It hasn’t helped put more moisture in mouth. Does anyone have something else to put moisture in mouth.

[Gadyal]

Yes almost all my teeth, did not have bad teeth