My Dentist didn't know what Lupus/Sjogrens was!

I went to the dentist today for two fillings. Usually she dives in with the huge syringe before even saying hello. But this time I stopped her and asked if she knew i was on Steroids, which she didn't. I then asked if she knew I was also on Azathiaprine, which she didn't. She didn't know what it was either. I asked if their were any contra-indications to using local anaesthetic with these drugs, but she didn't know and went to ask her colleague. It turns out there are only contr-indications when doing extractions. During this visit I had to explain to her what Lupus was and to my complete suprise, I had to explain to her what Sjogrens is. I can't believe my dentist didn't know what sjogrens was, as to those who suffer with it will know, it affects your salivary glands, reducing the amount of saliva we produce, which in turn causes more decay and dental problems.

Just wanted to warn you guys not to assume that your dentist knows anything about your meds or condition. As a result of my questioning today I am now going to the hospital for an extraction. Lucky I spoke up eh!! (think I might get a new dentist!)

25 Replies

  • Yet again,I had the same situation but,it's not just the dentist's is it.I have also found that people who don't understand Lupus think you have some sort of contagious desease.Well,let's tread carefully folk's and try and be self-aware.

  • Yes, I was invited to a wedding and when I stated that I would come if I was well at the time, explaining the lupus, I was asked not to come!

  • That's shocking!!!! Binkey, if I were you, I would get some leaflets from Head Office and hand them into your dentist. Out of interest, was this an older or younger dentist? I have sjogrens and have thankfully always had a dentist who understands and is aware of the disease. Good luck and it looks like you're going to have to educate this one yourself! Lx

  • Hi Lorraine, She's quite young, about 35ish. x

  • I agree with Lorraine, if the dentist is not aware then you should make them aware. Luckily my dentist is very up to date on all this and the practice always check on my current medications when I book in & again when I see the dentist.

  • Thankfully after I said that I was on Azathioprine to my GDP (she did not either knew what it was) and I explained that I am immunosuppresed and that Aza is actually a chemo. I was referred to the special dentistry at Guys and St Thomas Dental Hospital in London. My GDP basically refused to touch my mouth. Now I have a wonderful Consultant who really knows what he is doing. He also keeps himself updated on my medical situation and is not fazed by anything which I am allowed to have. He also checks my blood test, always gives my prophylactic a.b treatment and has contacted my Rheumatologist on several occasions. My suggestion is that if you feel that your dentist doesn’t know much about Lupus. Then ask for a referral to a specialist. Who on daily basis meets immunosupressed patients. Who knows what you can have and not have. Good Luck x

  • Thanks for this advice, I'm seeing my rhuemy tomorrow and will see if she can help hook me up with a specialist dentist. My teeth are starting to crumble and I'm terrified of going back to my old dentist now. If I hadn't have spoken up she would have done the extraction unaware of my meds and condition, that's just crazy, and scary. Really appreciate your input.

  • You poor thing. Have you tried Colgate Duraphat 500 toothpaste - my Dentist put me on it plus Colgate FluoriGard this last one you rinse with every time you eat and last thing at night. Dry mouth causes the problem so at night after the Fluorigard I pop an XYLIMELTS lozenge on my gum and keep mouth moist. Took me all ear to get this together but worth it - Good luck

  • I have SLE lupus & Sjogrens disease. Two yrs ago I was eating an air head & my tooth broke un half it did not hurt @ all. However when I went to the dentist I added those for illness & to suprise I was told by the dentist that the sjogrens disease is prob the reason for the tooth breaking due to dryness & lack of calcium from sjogrens so she gave me biotene mouthwash toothpaste & lubricant..not to mention I never had a cavity & was told my mouthwas in very good condition!!

  • Hi

    When I go to the Dentist he always ask for a list of my medication to see if there are any changes. But I have never told him that I have SLE, but he always looks up on the computer what the medication is. I am due to see my rheumy in a couple of weeks and ask him if I need to see a dentist from the hospital.

  • since having lupus the amount of anasthetic the dentist has to use is crazy. It takes ages for my mouth to go numb and she has to use the max dose of it. Then when it is all working i can't speak cos my wholse face is numb.

    Also have had loads of dental treatment, but no-one knows whether its lupus/medication related - i am sure it is my teeth just seem to be crumbling :(

    I also had to explain lupus to them too. :)

  • Right with you Sal, my teeth are like chalk!!

  • Me too, little chips keep breaking off but no plaque anywhere in mouth. Dentists have always told me teeth are very clean and I've never needed plaque removal.

  • I am a dentist and have SLE.

    Acorn1, your experience with your dentist really surprises me. Dentists learn about all autoimmune diseases including lupus and Sjogren's Syndrome during the second of four years of postgraduate professional training for the Doctor of Dental Medicine degree


    I think it was very generous and understanding for you to have explained the disorders the way you did.

    I always carry some very basic informative brochures about SLE in my purse to give to people who have never heard of it. Usually I give them to a hair dresser or pharmacy technician sho is providing some service to me. I have never had to give one to a physician or dentist.


    Lack of saliva or "dry mouth" can be a primary symptom of SLE or Sjogren's Syndrome or a side effect of many of the medications prescribed to patients with SLE. Biotene, in its many forms, is an outstanding product to restore comfort and combat the tooth decay that can result from this lack of saliva.

  • I felt sure that Dentists must learn about Sjogrens so thanks for clarifying that with me. As a Paramedic, I know it's impossible to remember everything you've learnt whilst training which is why I always check for contra-indications before giving anything. I'll take a leaflet in next time! It's worried me a bit.

  • My dentist wasn't aware of the problems Lupus causes with treatments either. My medication and Lupus has given me extreme dental decay and I'm now waiting to see a surgeon to have them all removed! Yet another upset because of this illness! I'm so glad it's not just my dentist who needed advice and guidance although really they should be aware of medical problems, treatments and the result on our mouths and teeth! Take care. x

  • I had no idea Lupus caused dental issues! I have been having nonstop issues...just recently I had 2 extractions because my teeth literally dentist knows I have Lupus and never once said that my isssues could be related to my disease! Wow...I have always had nice teeth and I don't smoke or anything like that but decay seems to thrive in my mouth. I don't have any issues of dry mouth though. I did have my right salivary gland removed several years ago because it had a calcified stone the size of a large marble in it...wonder if that was Lupus related too.

  • Has your Rheumatologist spoke to you about Sjogrens syndrome? It can come secondary to Lupus or just on it's own. I don't want to suggest you have Sjogrens but it's this condition thats causing my tooth decay, not the Lupus. My Salivary gland blocked up last year causing my face to swell which is how I was diagnosed. I'm not sure however if Lupus on it's own causes tooth decay. My teeth too are crumbling, it's grim!!

  • My dentist is really good, he used to work at Guys and he referred me to oral surgeon about my mouth ulcers. Also, his mother in law has lupus so he understands what's going on a bit more than a medical dictionary. He always checks my meds and and gets me to sign the form.

    Its scary to see the difference in care! I'm so lucky when I look at how some of you are treated!

  • I came back from my Specialist Dentist at Guy's Hospital. Guess what?! Every single tooth in my upper jaw have to be extracted. They are basically chalk and crumble so easily that you can barely touch them. He tried with absolutely everything he could to keep them in place, but everything has so far failed. I brush my teeth, I don't have any gum disease, I floss, I don't drink fizzy drinks etc. I have all my life looked after my teeth. After he said that the plan was to extract them, put temporary dentures (for 3 months) and then refer me to the 21;st floor for the titanium inplants. I broke down and started to cry. I am only 36 years old and I will be having dentures. Even though it is temporary ones before the inplants. And I have all my life looked after my teeth and still that wasn't enough. Totally miserable situation.

  • My dentist is very good, she knows about lupus and that people with sle dont always feel the effects of novocane unless in a very high dose, she awalys trys to do anything with me without the pain relief, as the novacane has a way of setting my flares crazy, does anyone else know this info...she said if your hypermobile and lupus sle then theres a higher chance some anisetics dont work as well with us, im the same with the frezze spray, had the have glass removed from my finger frezze spray dont work so had it done cut open feeling everything xx

  • Hello I'm 27 I suffer from lupus and sjogren, I was diagnoses 6 years ago, I'm currently in predi, azathioprine, and hydroxi. Up until now I had only felt my teeth sensitive but in the last few month I have had a lot of decay went to the dentist and I need 5 fillings, I have never had any problems with my teeth before, NHS only covers for

    Metal fillings so u am having to oay almost £400 for white fillings.

  • I have had the same sort of experience my dentist was patronising me though suggesting I eat too many sugary sweets and this was the cause, I don't eat sweets. But I find that even after I explained Sjogrens to him he ignored me. So I wrote a letter to the dentist association and didn't even get an apology :-(

  • Hi Maximilian- I hope you changed dentists and have a knowledgeable one. Try Colgate Duraphat 500 toothpaste and Colgate Fluroguard mouthwash. Dentist only for the toothpaste and you have to ask at Boots for the wash. I use XYLIMELTS popped on the gum to keep my mouth moist thru night - they were featured in the last Sjogrens magazine and are available on line - I had first decent sleep after I used them ! Hope this helps

  • There is such a general ignorance of Lupus but especially Sjogrens!! Luckily my Dentist did know, she also always asks what meds I am on, I thought all dentists did? Glad you are finding a new Dentist!

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