I have had Lupus for a long time but it never affected my mouth before.
After a very stressful few weeks/months, I now have a mouth full of ulcers. Cracks on my tongue, lips and the skin around my mouth.
I was putting the ulcers down to the Lupus. But everytime I brush my teeth now, my mouth is on fire. I grew up eating raw scotch bonnets without a problem and now I can't take any spice whatsoever.
Has anyone else had this reaction? Is it the Lupus or have I developed an allergy to toothpaste. I have been using sensodyne for years now and it was never a problem, but I'm starting to think I'm allergic to toothpaste now.
I have developed other allergies over the years. I can't wear earrings anymore, even if they're solid gold. I can't handle latex or adhesives like op-site dressings and tegaderm. My body also rejects cannulas and pushes them out within a few hours. I have developed a histamine intolerance too.
After googling it seems there are multiple things you could be allergic too in regular toothpaste and some of the alternatives I've found seem to contain one or two of them, but I don't know which my mouth is reacting to.
Has anyone else experienced these issues? If so, have you found a toothpaste that is tolerable? Grateful for any tips. It's driving me mad.
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Hi, you say you've had a stressful time recently, its possible that this may have caused your lupus to go into over drive? sensodyne are always bringing out new types with various ingrediant changes, I used to use them also for many years as was recommended by the dentist. one new one thats supposed to help gums too, ended up making my gums bleed! its best to look for a toothpaste that has no SLS these are not so harsh inside your mouth. sensodyne pronamel repair doesnt contain it, I also alternate with biotene toothpaste and their mouthwash. it seems to help keep ulcers/cracks to a minimum. now that the suns arrived my lips have broken out so ive slapped on plenty of lip salve.
I found crisps, crusty rolls cause the skin inside to peel and as you say spicy foods. problem is I love all of these and when i cant resist I know im going to have to use plenty of toothpaste/ mouthwash after 😁 glass of water while eating I think helps.
I've been struggling to control my lupus symptoms since I had surgery for endometriosis in 2022. They gave me ciprofloxacin for an infection and I've been much sicker ever since taking that (I was undiagnosed at the time). I have PTSD as well, but I do agree the recent stress has made it even worse.
It's sensodyne pronamel repair that I have been using. It was always fine, but it burns like hell now. I'll look up biotene...I've not heard of that before.
I have to use steroid cream alternated with a non-steroid cream on my face and other places as recommended by a dermatologist, but it's not helped with the cracks and peeling around my mouth at all.
I love those foods too, but as soon as I brush my teeth the burning is insane, so that's why I'm sure it's the toothpaste. I tried another type of sensodyne too, but the same thing happened.
Sorry to hear that you are having such a lot of problems.
I get less mouth ulcers now but the skin in my mouth - cheeks, gums, roof of mouth just sort of falls apart at times and I have a low tolerance of hot - temperature - food & drink, I do miss a hot cup of tea sometimes! And as with Chris rough food lacerates...
there are 4 Pronamel repair tooth pastes, the green one Sensodyne Pronamel Daily Protection doesn't have sodium laurel sulphate and doesn't have a strong flavour, my new dentist recommended it because of the no sls and not a strong flavour (he got the measure of me and my mouth very quickly) and it has made a difference. But it is more expensive and not so widely stocked as the others. My partner uses the freshness or multi-action versions, but too strong for me
I have used Biotene toothpaste and mouthwash but I do find it a bit strong after they changed the formula. The mouth gel from Oralieve is very good, not a strong flavour (I don't like their spray one too much flavour) and feels soothing and keeps my mouth from drying out and seems to help things heal up when it's bad, their mouthwash says it's mild but like other things not very mild in my opinion!
Kingfisher fennel is mild and no SLS, they do fluoride and not fluoride. Weleda calendula toothpaste has minimal ingredients but if you have a dry mouth not the easiest to use, but can mix with the Oralieve mouth gel.
I hope you can find ways of solving this, of having a comfortable mouth.
It's the green pronamel I've been using... I just don't think I get on with it for some reason. I will look for the Kingfisher and the Oralieve. Just going to keep trying new things and will hopefully get somewhere with it. Thank you for all of your tips.
Like you I have increasing allergies and reactions to things.
With toothpaste, my dentist tried to encourage me to move to a fluoride toothpaste. He said those with autoimmune disease can react to an ingredient in toothpaste (have forgotten what).
He initially prescribed Duraphat 5000 ppm which was very good. Then recommended Sensodyne pronamel. Used various options(so many). Currently using their Advanced Enamel Protection, extra freshness. It can still make tip of my tongue burn a little but I like this best. It’s very frustrating having to go through various products to find something to suit you. Good Luck. Maybe you could get the prescription Duraphat to start.
Hi, I have used duraphat 5000 in the past, but my dentist told me it's not good to use it for a prolonged period of time. She put me on it for six months and then told me to stop.
I think there are multiple things in toothpaste we can react to which is why I'm finding it hard to know which alternative to use. I think the main thing is sodium laurel sulfate which is in most high street brands. I had to stop using that in shampoos a long time ago, but never had a problem with my mouth until revently. I've heard it can be the mint flavouring too, and about three or four other things.
It was sodium laurel sulphate my dentist mentioned. You sound well informed about it and I hope you find a solution and look forward to hearing if you do. Good Luck with it.
Have you seen the dentist recently? they may have a solution. or the GP.
If you search for sore mouth on here, youll see many of us have the same problem and there may be a suggestion that might help. Hope you find something that helps relieve the sores soon as that in itself can make you feel miserable without other things going on. x
I go to the dentist every six months and hygenist every six months in between, but haven't had this reaction before. I have an appointment coming up so I'll ask, but they seem to know nothing about Lupus or Sjogren's, so figured I'd ask here and see what others' experience is.
Thanks, I'll look for sore mouth...I'd been searching for toothpaste and not getting any results. Online it seems pretty clear if it's causing ulcers, cracked lips and peeling around the sides of the mouth it is likely a toothpaste allergy, but none of the sites confirming that tell you whicb toothpaste to use instead lol...helpful. x
Toothpaste is normally antibacterial and hypoallergenic! Spicy food can cause ulcers or affect the numerous taste buds on the tongue increasing INFLAMMATION!🙄🥹👆and possibly inducing a lupus flare?
Hi, I have been eating spicy foods my whole life without any issues and I've had undiagnosed lupus for 20 years at least. They just hadn't been doing the right tests, so didn't diagnose until 2022. I don't think my mouth is infected either, it seems very much triggered by toothpaste.
I stopped having spicy food over a month ago now, but when I brush my teeth, my mouth burns and my skin around my mouth and lips cracks and peels. My understanding is that ulcers are common for people with lupus, which is why I just put it down to that and stress, originally.
But the cracking skin around the mouth seems to be indicative of a toothpaste allergy according to research online.
I was really seeing if anyone with similar issues has found a toothpaste that they can tolerate. Thanks for responding though.
Hi,When you are in high stress mode all your skin, mouth , scalp, gut, muscles everywhere/ everything will flare up with SLE /Lupus. It is a common known thing really - Stress is a common factor trigger if you can lower that stress level thing will calm down instead of introducing more drug and stuff into your body.
Try seeing a dentist to see if they can help you out to find a solution for your tongue and mouth . They might make an urgent referral to a specialist to get you looked at ,
Hope this helps .
Whatever food you eat , pls do keep a dairy of it . So that you know what makes your mouth worst . .
My mouth only gets worst when I get a bad flare up I feel as though all my teeth is about to fall out and my gums hurts alot .the only thing that works for me is Corsodyl once a day. I only use it once and it does makes a huge difference to my mouth. I do get ulcer at the back of my throat and I gurgle using the same Corsodyl .
As your mouth is that bad you might want to try Corsodyl tooth paste instead. I would suggest to change your toothbrush before you start using any new toothpaste or make sure your toothbrush is run under a very hot water( kill any bugs off)
Flossing twice a day helps and brushing twice a day . I switch my toothpaste to Oral B density tooth paste .
Reduce your sugar intake and sugary drinks and sweets and Chocolates it will help in the long run.
And regular mouth wash try finding one that works for you.
Thanks. My Lupus symptoms have never included my mouth up to now. I am in a permenant state of stress and have been flaring for an extended period of time as I have PTSD. So I feel like this reaction should have shown as one of my lupus symptoms by now.
Everyone I have spoken to also used/uses Sensodyne. I'm almost certain that is what I'm reacting to now. No foods bother me except spice, but nothing hurts more than the toothpaste itself. Brushing my teeth is the most painful part and leaves my tongue feeling swollen and get more ulcers overnight and the skin around my mouth starts peeling after use. I think it's worse when I sleep because I'm not constantly flushing the toothpaste by drinking water like I am when I'm awake.
I already use tepe interdentals that I dip in a pot of mouthwash before cleaning between each tooth as recommended by my hygenist. I was told I should not use corsidol for more than one month and have used another less harsh brand for several months now with no issue. The mouthwash doesn't burn at all it's literally just the toothpaste and if I were to eat spicy food it will burn, but I think that's a result of the damage from the toothpaste. I don't eat sugary food or drink sugary drinks.
I'm very familiar with my lupus and symptoms, so I was really wondering if anyone had any suggestions for toothpastes that don't contain the known allergy triggering ingredients like SLS, fluoride, mint etc. I want to try an alternative natural toothpaste at least, and then if that doesn't work, I can discuss it with my consultant at my check-up next month.
I am certain it's the toothpaste though. Will check out Oral B but I think the high street brands generally use similar ingredients.
Hi, my Rheumatologist prescribed soluble steroid, soluble antibiotics and Nystan liquid. I have to mix them in warm boiled water and rinse my mouth out three or four times daily. There is a marked improvement within three days. Honestly worth trying as I have to give up spicy food when I have my mouth like this and although I use Sensodyne brushing my teeth is painful. Xx
Gosh, sorry, that is a lot of effort on top of everything else we have to do to cope. A lot of people with mouth issues seem to being using sensodyne too. I know it's good for sensitive teeth but maybe it's not so good for the mouth with lupus. I'm really hoping someone has a natural toothpaste suggestion that resolves it. But if not, I'll mention what you've said to my rheumie. Thank you xx
Honestly Chris my tongue is cracked and full of Littke white hard ulcers, I have ulcers on my palette, between my teeth and in my cheeks but I kniw that it will get better within days. My GP refuses to prescribe the three in one for me so my Rheumatologist prescribes in yearly and it works.
No I am truly awful at the moment and getting anyone to give a 💩 is soul destroying. The first GP said I was a “ complex case” and “above my pay grade”m the second GP said I had cancer red flags and he could not deal with everything so that was a priority. He sent he on a 6 hour investigation for breast cancer which proved needless but at least they identified serious concerns about my mobility and dexterity and advised referral to the Muscular Skeletal Team. The Rheumatology Service gave me six weeks of high dose steroids and I was able to weight bare again but two weeks after I finished the dose I was struggling. Four more calls to them have been met with complete I difference. I am not sleeping, the pain is so severe I fear that I will end up permanently in a wheelchair. I am now suffering with all the damned ulcers on top but despite the Rheumatology Nurse being very concerned she is getting nowhere with getting me any help.I have had a very positive relationship with my Rheumatologist and valued him but he has let me down so badly this time.
😂😂 nope. sometimes its good to have a rant, also think it helps to know were all struggling one way or another and not alone. yep! Im at the point where i cant be bothered with any of the consultants, they just want to pass you from one to the other. funny enough, the one I've found useful is physio!
suns shining this week, hoping i can enjoy it without adding more lip cracking and rash! x
I think when I was first diagnosed with Lupus in 2009 it was so bad and it took me until three years ago to find a Consultant who listened and seemed to give a damn. I am beyond angry and disappointed with him. Even the nurses said to be he is different to all the others and yet he has left me struggling to walk, without sleep and in agony for weeks.
I referred myself to the MSK Team as if I wait for the GP`s I will be pushing up daisies. I just want someone, anyone at this stage ,to look at my legs and tell me that my tissues are not dying. It shouldn’t be too much to ask. In fairness they responded to my email the following day so a glimmer of hope 🤞🏻
Very overcast here in South Wales but warm at least and not raining .xx
I was prescribed high fluoride toothpaste by my dentist about 18 months ago but recently developed mouth ulcers….I have now stopped using it….I changed to one not containing SLS.
It’s too soon to tell if the prescription toothpaste was the problem…..but do ask your dentist’s sdvice.I was surprised to learn how much knowledge dentists have of auto immune diseases.
Not yet, I'm going on Friday, but mine haven't displayed any knowledge of Lupus so far. The hygenist has been thr most helpful but her advice was about gum disease which runs in my family - luckily my routine has prevented it so far. I was prescribed Colgate 5000 for six months in the past and was fine with it, but have also used Sensodyne many times over the years without reaction.
After researching, fluoride, SLS and mint as well as a couple of other ingredients are causes for allergies and all the symptoms I have now. I think you might be allergic to fluoride. I think my biggest issue will be the SLS because I can't use shampoo with it in.
I have ordered a natural toothpaste without any of those ingredients and will see if it makes a difference. I'll let you know if it does. X
I would be interested in knowing.. I have RA not Lupus…& having been on many drugs over the last 20+ years,I have never had mouth ulcers before.I only started using the new toothpaste this week & I’m not at all sure the fluoride toothpaste was the cause …time will tell.
Does the new toothpaste have fluoride in it? I think a lot of the SLS free ones still have fluoride, so if the switch doesn't work, maybe try using a fluoride free one.
The Green People.one I've ordered doesn't has SLS, fluoride or mint so might not help me identify which is causing the reaction, but if it relieves the problem I'll be happy. Then I can trial and error working out which ingredient is the problem.
I'll message in about a week and let you know if it's worked. Good luck with your new one too. X
I bought Sensodyne Repair.It does contain Fluoride, but far less than in the Colgate Duraphat 5000 I had been prescribed. I never had any trouble with lesser dose Fluoride in tooth paste before….so will try this No SLS one & see how it goes.I saw the hygienist last week & he thought it worth a try.
Yeah, anything is worth a try! Really hope it works for you. I think just keep ruling things out until you find one that works. I never used to have any allergies and now I have about 5. I'm going to remove all of the known causes at once, hopefully get rid of the problem and then reintroduce one by one so I can determine which specific ingredient my body has decided to take issue with.
Just in case this is of any use to you, I use kingfisher fennel toothpaste with fluoride as I find I can't tolerate mint toothpaste very well. I also have histamine intolerance and have had real issues with intolerances for the past two years. I also use ultradex mouth wash as it's unflavoured and I seem to tolerate it just fine. I hope you find relief soon, it sounds really uncomfortable for you - mouth pain is just so invasive and hard to ignore isn't it?
Thank you. I will look up Kingfisher! The one I have ordered is fennel too, by Green People. But it doesn't have fluoride which I know could be an issue further down the line. If it works, I'll trial Kingfisher and hopefully I might be able to rule out fluoride being the cause. I think it is most likely the SLS and/or the mint.
It is very uncomfortable. I honestly just can't take any more issues that I have to manage. I have migraines with vertigo, endometriosis, uterine adenomyosis, bile acid malabsorbtion, sjogrens and SLE as well as the mental health problems and all the allergies...seem to get a new one every year. I have to take 14 - 20 tablets a day, use so many creams and ointments, walking stick etc etc. I'm just sick of it all. It's a full time job managing all the appointments and prescriptions lol. X
Green people do natural toothpaste..you might want to try that. It sounds horrendous what you're going through right now.Have u tried a warm salt water mouthwash? I know that many people have found it helpful when they're experiencing mouth ulcers. You can do it several times a day until you feel some relief.
I would say try to leave your toothbrushing for a couple of days n just rub around your teeth with your finger dipped in some salt water.
I make my own toothpaste and have been for years. I use bicarbonate of soda made into a paste with a bit of cold water and I add peppermint and lemon essential oils. I keep it in a recycled jar on the bathroom shelf. Hubby uses it too 😁
My youngest daughter has been doing mouthwashes with coconut oil and she swears by it. I have to say I haven't tried it myself...yet.
I recently started making my own lip balm too with coconut oil, beeswax, vitamin E and lavender essential oil which is helping my dry lips..family n friends love it too! 💋
I hope some of this helps. Stress drives lupus as you probably know so finding some support during this stressful time is important. You must take time for self care 💜🌈🦋
Thank you. That's reassuring as I've just ordered Green People fennel toothpaste, but wasn't sure if it would be any good, so 🤞🏽.
I love that you make your own! I am often bedridden with ME, which I forgot to mention above. I struggle to find the energy just to shower or make food, so I've been looking for a toothpaste I can buy ready to go to make things as easy as possible for me.
On a couple of occasions I've just rubbed mouthwash around my gums and not brushed and immediately noticed an improvement the next day. So while the autoimmune diseases (and everything else) are all flaring, I'm sure Sensodyne is a specific trigger for me.
Looking forward to seeing what happens with the fennel toothpaste! X
I have had lots of issues with toothpaste and also with shampoo, that I put down to SLS.I too have been using Sensodyne Pronamel, which does not have SLS, but recently found it it felt like my mouth was burning and the tube I find difficult, the top getting messed up with toothpaste and toothpaste getting all over my hands and irritating them too.
So I tried Tesco Pro Complete Sensitive which on tube (there is no box) says it helps to strengthen and remineralise enamel. Only £1 at tube. It has SLS in, but I am finding the toothpaste is not irritating my mouth. I always try to swill mouth out well after, sucking water through teeth, and flossing, rather than using a water floss.
Thank you. Does the Tesco one have mint in? If not, maybe it's the mint you're reacting to as that seems quite common from what I've found. I'm going to try the all natural Green People one I've ordered, but might try the Tesco one too once I'm on top of it. £1 is much more appealing than £6.50 for a small tube 🤣 x
No mint listed in the Tesco Pro complete Sensitive ingredients.
I'm also using kids toothbrush for back teeth, as well as my normal toothbrush, being careful where I use electric toothbrush so as not to loosen teeth.
Probably breaking many dentist rules, at least those that get into TV adverts.
Ok, interesting. Seems to tally up with it being the mint for you. I think you have to do whatever works for you, they should udnerstand that. I had to stop using my electric for while too. I've been alternating now between a soft toothbrush and electric. Hopefully the new toothpaste will work and I can go fully electric again before I see my hygenist and avoid a telling off 🤣
Hi. I have a very sore burning mouth and gums. This sounds like BMS. Burning mouth Syndrome. I was diagnosed with this over a year a ago. The dentist can give you a toothpaste. It's a Colgate. I will look the name up later and let you know. I had thrush in my gums as well. What you can try is coconut oil. Hard pressed . Just a small amount on a teaspoon. It will just melt in your mouth. Hold it it there for a minute or so. It soothes the whole mouth. I use it before I clean my teeth. It puts a barrier there, for the tooth paste. It does gets worse with stress. There is a private page Facebook. Worth a try .Good Luck Linda. x
Thanks for the tip. I think I'll try natural toothpaste first as I also don't want to prevent the antibacterial elements from doing their job with my family history of gum disease. I have used Colgate Duraphat 5000 too in the past, but my dentist told me you shouldn't be on that for a long time unless absolutely necessary. X
hi there - I had literally the same experience recently and like you put it down to lupus as I do get ulcers from time to time but never this bad - yes, entire mouth was on fire constantly and showed no sign of clearing. I have used different sensodyne products before without problem. I googled the life out of it, learned that sodium lauryl sulfate can cause adverse reactions but I know I’ve used other brands containing that so I couldn’t understand it at all. After a month or so I stopped using the toothpaste & went back to my usual Colgate Total - problem cleared. I know we can all develop allergies out of the blue but also manufacturers are forever changing their formulations so until I get a reaction from Colgate I’ll just stick with that! Hope your solution turns out to be as easy as mine x
I used to use Colgate with no problem too but my dentist told me to switch back to Sensodyne. I think I'll stick with the plan of going 100% natural for a while and try and clear it up and then if I get it under control I might try reintroducing colgate. So many of the people saying they experience this use Sensodyne. Maybe it's not just a coincidence! X
Hi, you are not alone I am too having a flare up, my mouth is full of ulcers, it is a known side effect of lupus. My skin on my tongue peels away, my mouth is so sore even just drinking water hurts them , I know you can buy mouth wash that helps with ulcers. But believe me you are not allergic to toothpaste, an I wear dentures so I know its not toothpaste doing this to me.
I'm sorry you're experiencing that too. But I think mine is different to yours. I can eat and drink fine, it's as soon as I use the sensodyne that my mouth is on fire. Toothpaste allergies seem to be getting a lot more common and I am becoming allergic to more and more of late. The research suggests that if it spreads to the skin around the outside of your mouth (after the toothpaste has touched it) then it's more likely an allergy to something in the toothpaste. I have had occasional ulcers as a result of the Lupus, but this is very different.
I use Happier Beauty toothpaste and Parla Pro tooth tabs. Both natural but also both mint. I saw another natural one recently that comes in a few different flavours - Zing - but I haven't tried it yet.
Sorry, that sounds horrible as well. How often do you see Rheumatology? I've never tried to contact mine outside of scheduled appointments - I can't imagine I'd get a response. I just see them every three months, but it's always the same...rushed to discuss everything, then wait ages to give samples and get a Steroid injection.
My lupus hasn't been under control since I reacted to an antibiotic in October 2022! All of my illnesses have been flaring at once ever since. It's a nightmare. I also notice I get more sick every time I have a procedure and I'm given other drugs. I've had major open surgery, major laparascopic surgery, six endoscopies under sedation, two colposcopies, two colonoscopies and a leg biopsy all in the last 5 years. Plus countless SehCat scans, CT scans, MRIs, xrays and ultrasounds. They say the radiation is small but my body hurts more afterwards every time, especially if they use contrast. During all of that my mouth has never been a problem up until now. I wish I'd never swapped Colgate for Sensodyne and maybe I would have been ok.
Hi there, having read your post my mind is jangling. O er some decades Ive had the reactions you describe too and until a recent diagnosis of SLE & other autoimmune gate crashers, I had no idea that these things could be part of a bigger picture.
Recent similar mouth issues have me now trying a non fluoride toothpaste - it purports the support the mouth biome and consequently the gut.
My personal feeling is that our biome areas are essential to accessing better health and my Rheumy has coincidentally begun including it in her vocab. Anyway - the toothpaste - so far so good. Hygienist yesterday wanted to give me a sticker after 3 year interval of seeing her. Toothpaste begins with G and ends with ology good luck.
Yes, I agree. I was following the guidance to have 10 fruit and veg a day and at least 30 different plant based foods a week. I was regularly changing the produce and trying new things. I started having a lot more seeds, beans and pulses and less meat.
It was going well, but my health continued to deteriorate with my other illnesses contributing and I just don't have the energy to keep it up with all the prep required. My dietitian says there's not much I can do for now. I start CBT for ME soon and EMDR for PTSD, so if I can improve those things and get better quality sleep I hope to get back to having a diverse mostly plantbased diet.
I also need to get out in nature more once my walking ability improves. I've heard we're missing essential microbiomes through limited skin contact with nature. My family think I'm crazy, but I very strongly believe the modern lifestyle is getting the better of us. I'm seeing so many young relatives and children of friends developing chronic illnesses. I want to go back to basics if I can get my strength up.
Hello, I'm sorry to hear your problems. I developed a severe reaction to toothpaste and it took me a while to associate all the problems with the toothpaste. I have found some that are free of all the offending ingredients but I live in France, so that's not helpful to you. My first port of call was the health food shops and although expensive, it helped me to clear the problems up.Good luck.
I’m sorry you’re having a rough time❤️ you should check with your rheumatologist, sounds like you may have Sjrogens which is one of the Lupus markers. They can test your blood and tell you. Sjrogens causes all of the symptoms you’re having. I’m having a rough time with it also. Spicy foods, coffee, smoking makes it much worse. The sores and ulcers are part of Sjrogens and needs to be addressed immediately. I’m not saying you may not be having a reaction to your toothpaste but I think it could be sjrogens. Good luck ❤️
Hi, yes, I have SLE and Sjogren's. I know the mouth issues are associated with both diseases, but I have my reasons for thinking it's the toothpaste contributing too.
you sound like you have a thrush infection basically fungal infection ur will make your mouth burn like that I would go to your dentist they can call in either something to switch in your mouth or give you diflucan or melt in your mouth nystatin < (which I was allergic to) if your mouth burns worst in it you are allergic to it
There is an anaesthetic spray called Difflam that can help numb the mouth when it is sore to help with eating. I found this useful earlier in the year and I have this on prescription now for emergencies. Duraphat toothpaste which dentists prescribe does have SLS in. I too find Biotene toothpaste good and also their moisturising mouthwash. A word of caution about going down the no fluoride route through a natural toothpaste or otherwise is that if you have sjoegrens and produce little saliva there is a danger of you developing teeth and gum problems. Saliva helps kill bacteria in the mouth. If you don't think you can tolerate a fluoride toothpaste you could ask your dentist to paint your teeth with fluoride every so often, my dentist told me that it is absorbed by the teeth and lasts for a few months. This may be one way round your problem. I do hope things improve for you. All the best to you.
Thanks, I don't have any issues eating for the most part. It's purely when the toothpaste hits my mouth or the skin around my face. Then any spice after brushing my teeth. When I didn't brush my teeth, spice was ok, so I'm certain it's a toothpaste ingredient I'm allergic too.
I have both Lupus & Sjogrens. The mouth ulcers are some of the very worst of symptoms & side effects that I endure. The first time it started with an ear ache before appearing as sores along side my tongue. The pain was excruciating. This is what I do now. First I need to watch my sugar intake. Caffeine, alcohol and junk food also contribute. I make my own toothpaste with baking soda & cinnamon essential oil. I use a water pic every day. There is a mouth rinse and an ointment that your doctor can order when you need medication for the sores. I also use the prescription cevemeline to help my body keep moisture in my mouth. I hope something here helps. I know the first time it happened to me I was in so much pain I was sobbing.
I would try using Sodium Laurel Sulphate free toothpaste, some Sensodyne toothpastes have it in their ingredients but not all. Look at the list of ingredients on the tube.
I had a very similar problem. I was having a teeth hygiene day and brushed my teeth, maybe a bit too long and then tried a new Corsodyl daily mouthwash after using my regular toothpaste max white toothpaste. I don't usually use mouthwashes as they do give me mouth ulcer. The next day I woke up and my tongue hurt and was swollen along with ulcers all over my mouth, tongue and inside of my lips. After eating something bland as I have acid reflux problems so I am limited to what I can eat and actually hold down, my entire mouth, gums, teeth, tongue were on fire. It became unbearable. I did some research and found that either rinsing your mouth with bicarbonate soda or baking powder would help with burning which it initially did but everytime I ate these problems started again. This went on for months but by day 3 it started my acid reflux problems where I was physically getting sick and couldn't eat anything plus I was getting chest pains. I contacted both my doctor and dentist and was prescribed antihistamines which appeared to help the first couple of doses but then failed to do anymore. I was urgently referred to hospital as an emergency due to the chest pains as my doctor thought I was having mini heart attacks but I didn't agree with this because I was getting my usual acid reflux symptoms with the exception of this burning mouth issue. After attending hospital and having alot series of emergency checks, the Consultant agreed with me I was probably having one of my acid reflux flarese but that didn't explain my burning mouth or my previous swollen tongue. When back at home, I went back to my own researched remedy to just help get me by which took time but eventually worked at stopping my burning mouth. Please note I was having a break from my Lupus meds when this all started. After weeks these symptoms are coming back again minus the swollen tongue. After brushing my teeth I have to totally rinse my mouth out with fresh cool water. I have tried changing tooth pastes and haven't used any mouthwashes. My mouth again is starting to burn and the surface inside my mouth feels gritty rather than smooth when I run my tongue around the inside of my mouth. I have gone back on my lupus meds a few days ago. When I first started my lupus meds, Hydroxychloroquine a few years ago I was put on a high dose and experienced mouth burning back then after a few weeks on them. It was nothing as bad as this episode with swollen tongue and burning mouth over the past few mouths. Again this evening I've only eating bran cereals today and my teeth, tongue, mouth are all tingling bordering burning. I find if I brush my teeth lightly the symptoms die down now but if I have a coffee or food it just flares up gradually again. Sorry for the long response which I have no time to edit prior to posting as I'm struggling to stay awake. I feel exhausted. Do let us all know how you get on as I feel for you xxx
PS. Following my earlier post I am testing out Arm and Hammer toothpaste as not sure if this is helping calm it but like you I also had the cracked tongue so started drinking more water as thought I might be dehydrated. I changed toothbrushes and even my electric toothbrush head but this made no difference.
Hi everyone, quick update on the toothpaste situation...
I have been using Green People fennel toothpaste for a couple of days and I've seen an immediate improvement. From the first time brushing, the burning was gone and my tongue didn't swell afterwards and the ulcers have settled down. The skin around the outside of my mouth has stopped peeling and my lips are no longer cracking.
The rest of my lupus symptoms are still flaring as usual, but switching toothpaste has almost instantly fixed my mouth issues. That sensodyne proenamel (green lid) has something in it that I'm allergic or intolerant to and it seems possible several people have experienced the same from all the responses I've had.
I was able to eat spicy food again yesterday, after one day of switching! I'm going to give myself a bit longer to enjoy no pain and then I will reintroduce fluoride and see if I can tolerate it as I know it's important for my teeth.
Good luck everyone still experiencing mouth problems. Maybe give a natural toothpaste a try if you haven't before. Thanks for all of your responses.
That sounds like positive news! I remember the burning mouth well and it's such a relief when it starts to lift.
I switched to Sensodyne gentle whitening, but I did try the Pronamel one ages ago. I can't remember if it irritated my mouth or not, but I do recall the lid being difficult to open with my wrist pains so I've stuck with the gentle whitening one since.
Upon checking the ingredients of both, the Pronamel one has Limonene and the whitening one doesn't. I've had lots of reactions to skin care and I managed to whittle it down to a few ingredients causing them (including the SLS which many of us have problems with). Limonene was one of the ingredients I still had a question mark over, but I know it's classed as a potential irritant in some people. If you find the Pronamel one still irrates when your mouth is recovered, maybe try the gentle whitening one to see if that's better.
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good luck. 
Allergic reaction to hydroxychloroquine
Is it Lupus or am I imagining things?
Allergy skin testing / Cutaneous lupus 
Not Lupus
Weird Allergic Reactions
