Suttonís Disease II

94 messages in this subject.

Iíve been suffering with mouth ulcers for the last 30 years. I have at least one (the most Iíve had is 8) in my mouth 95% of the time. I get them anywhere in my mouth, on my tongue (top, bottom and sides) on the epyglotis (spelling?) and down my throat.
I use the orabase paste for the relief of the pain, if I can get my fingertip to the ulcer.
As far as Iím concerned I donít suffer from stress, apart from these painful blighters in my mouth. Iíve seen numerous doctors, a ENT consultant (who took a biopsy of one of my ulcers - that was VERY painful) , and an orthodontist specialist. None of these people were able to tell me what causes ulcers.
Doing a bit of surfing on the internet, I came across the following:-
Suttonís Disease II is characterized by the recurring eruption of painful inflamed ulcers in the mouth (stomatitis). There may be multiple ulcers of varying sizes. These ulcers in the mouth are commonly called canker sores. Suttonís Disease II is also known as Recurrent Aphthous Stomatitis. The exact cause of this disease is not fully understood, although it may be due to an abnormal immune response to the bacteria that are normally in the mouth.

There are a few web sites around with more information on this disease, with different research details, but there is no definitive answer as to what causes it or how to stop it.
Chris Gowland 14 August 01
Thanks Chris ... does kind of makes you wonder what Suttons first disease was ?
Dom Walton 15 August 01
Yes, I wondered that too.
On the topic of diet. I eat the same food as my wife, who rarely gets mouth ulcers, apart from green
vegetables - I hate them, and would rather suffer with the ulcers than go through eating green veg to see if they do stop me getting mouth ulcers. Does anyone else eat green veg and still suffer from mouth ulcers?
Again, on the subject of diet, I donít drink tea or coffee (my wife does) but drink Robinsonís unsweetened orange juice. Now, Dom
suggested that drinking lots of fruit juice could be a factor in causing mouth ulcers. Has anyone else come to that conclusion?
Chris Gowland 15 August 01
I practically live on lettuce, and like cabbage and green veg, but if i ever catch my gum with a toothbrush its guaranteed to turn into an ulcer,vick chloraseptic spray is a good pain teliever, and i like salt water mouthwahes, and eucryl smokers toothpowder to give my mouth a clean feeling.
michael wood 26 August 01
I have found that orange juice and anthing acidic gives me mouth ulcers, and also makes them last longer
spice 28 August 01
I charted my diet for 3 years. I wrote down EVERYTHING I put in my mouth
including toothpast and mouthwash. For me chocolate, coffee, oranges and
tomatoes always caused Aphthous . While each individual is different I
suggest you keep a day book with you and write it down. Some foods like chocolate
gave me an ulcer the next day. Others like coffee has a cumulative effect.

Dan 4 September 01
Dan - ave you stopped eating/drinking chocolate, coffee, oranges and tomatoes? If so, do your stil get mouth ulcers?
7 September 01
Must say I really enjoyed this site. I have recurrent mouth ulcers; certainly any poke in the mouth will do it. Dentists, toothbrush, dental floss, anything. In addition I have several Ēlow gradeĒ ulcers most of the time, not quite full blown ulcers, just stay in the Ējust getting ready to become an ulcerĒ stage. What Iíve found: candy of any sort, jelly beans, chocolate etc. will give me full blown in a couple of days. I can take a piece here or there, but overindulgence is not good. Of course, I probably reach for the candy when I am stressed, so one could hypothesize a different cause. Next, using mouthwash every day gives me ulcers. Never checked for that SLS, will do now. I never drink juice, donít like citrus and eat a fair amount of green vegís. So much for that theory, at least for me. I have tried Hydrogen Peroxide, virtually full strength on an active ulcer. Hurt like hell, but seemed to increase the rate of healing significantly. I wonder whether daily rinsing with H2O2 would be beneficial? I may try, although hate the taste. I drink only a little coffee, used to drink much more, no effect.
jeanne 29 September 01
Robinsonís Apple and Blackcurrent.

I believe that drinking this fruit drink brings me out in ulcers. I found this out after a recent holiday to crete. I couldnít buy this cordial, so drank coke all week.
The result - i didnít get a single mouth ulcer all week (normally i get about 6 a week).
On my return i went back to drinking the cordial. The very next day i had 6 or 7 small ulcers.

I have since gave up my daily tipple, to drinking water and coke.
The result - only 1 or 2 not 6 or 7.

What toothpaste do not contain SLS?
Paul Newman 30 September 01
Iím so glad Iím not alone mouth ulcers have been making my life a misery for at least 11 years, Iím 29 now and the prospect of another 40-50 years of them doesnít make me feel too happy! Iíve been to docís and tried alsorts which may have worked once but failed the second time. Iím now under a consultant who prescribed Betamethasone soluble tablets, theyíre steroid based. Although they donít clear the ulcers they do reduce the inflamation and pain.I have suspected toothpaste for a while, also mints and chewingum, which I chew a lot of to freshen my probably nasty breath! When I saw the consultant he took some blood which showed I was very low in Ferritin which is the bodys own supply of Iron, I donít know if this is of significanse yet I have to have it tested again soon. Most of the time I have at least 1 or 2, but when they really flare I get them all around the mouth and throat, then I end up with a blothchy swollen face and feeling horrible and weary!
Sonja Storey 10 November 01
i just started getting mouth ulcers about a year ago only i get about 30 at a time all over my mouth my doctor prescriped methylprednisolone and it makes them heal in about two days only problem is they come back after the 5 day pack runs out
Dawn 5 January 03
my daughter is 4 years old and has tonsilitis. she is scheduled for surgery next month. however she has at least a dozen if not more at any one time of ulcers in her mouth. they are on her tounge, gum line and the corner of her mouth. is there anything i can do to ease the pain. she is on penicillin for her tonsil infection. PLEASE HELP I hate to see her suffer like this. the doctors say there is nothing they can do
penny 24 January 03
robinsons apple and blackcurrant:
my ulcers have cleared up significantly faster since i finished my bottle,wont be drinking that again.
i also dont drink tea or coffee so substitute it with squash,water and fruit juice.whilst juice certainly isnt a nice experience during an out break, its got loads of vitamins which surely should prevent the little blighters.its ironic isnt it! on the matter of eating green veg, i believe it would do more good to de-tox for a few days than start eating it. ulcers may be a product of toxic build up in the body which must be dealt with before we can get rid of them. has anyone had a food allergy test?
helen w 15 February 03
Would just like to say that this is the first time I have ever come across anyone else that suffers from this condition yet alone a web site! Thankyou! My 13yr old son has suffered from severe mouth ulcers from the age of 2 and like most has seen many doctors. The only time he had any relief was after a course of treatment for Helicobacter Pylori but am told it was just a coincidence. Now he uses Dyflam Spray and ice cream. His orthadonist is reluctant to treat his teeth because of the ulcers and I can tell you he is hell to live with when he has them which is understandable when you see the size of them. Even doctors seem unsympathetic. Have not yet finished browsing this site but you have already given me some ideas to try. Thankyou ever so much xxxx
Bernie 16 February 03
The one kind of SLS free toothpaste I have found is Ēsensodine GelĒ...still have the ulcers although less frequent. I seem to bite them in my sleep and wake up in agony. Have just recieved gum sheilds from my dentist so will try them, along with toothpaste, multibionta and no fruit juice
julie, scotland 17 February 03
Bernie. Personally I alwys suspected a link between helicobacter and mouth ulcers. It seems to make sense. All the foods that give me indigestion also give me horrible outbreaks. I am going to the docs tmrw for the treatment course.
carol 22 April 03
Iíve been suffering with severe mouth ulcers for about 17 years. I usually get between 5 and 30, although a few years ago I had about 100 - I lost alot of weight in a very short time, even drinking was difficult. My face was really swollen. Iíve seen doctors, dentists, specialists, etc and have tried every lotion and potion under the sun. The only thing that seems to work for me is strong salt water, rinsed in the mouth as often as possible. Hurts like hell, but then again Iím used to the pain! Itís a small price to pay if the ulcers heal. I know for sure that chocolate sets me off, but I seem to be worse between the months of January and May. Why? Who knows. My paternal grandmother and maternal grandmother were both sufferers, but had different triggers. I think Iíve had a bad genetic deal - everyone has their weak point and my mouth is mine. Iím currently suffering, and about to consult a homeopath. Perhaps taking a good hard look at my lifestyle will shed some light on this. Good luck to all of you - you have my every sympathy!
Jo, Devon UK 23 April 03
Bless you all! I am having only my 4th outbreak but each closer to the last. I combed the web and found a few things interesting: 1. VERY high percentage of smokers who are trying to quit or who smoke very little get ulcers 2. I discovered that extra virgin olive oil as a mouth wash has a very noticeable effect on soothing the pain (actually, I even sunbath in it; and Sophia Loren bathes in it) 3. In address to the fasting idea; I fasted 3 weeks. taking nothing but spring water. I know that is an extreme amount of time, but it cured the ulcers in my stomach and eating green chili peppers didn't even bother me after that. So yes, if not a complete fast as this please try removing sugars and caffien from you diet for a while and see if that doesn't improve it. Lastly, 4. I am told that zinc is a must so maybe try that as a supplement to your diet
Daniel 18 September 08
This site is supportive. I have been suffering for a few years now. I went to the dentist once and he lasered one and it healed very fast. of course you can't do that everytime you have one. I do notice I get them when I work out more or get dehydrated. Also, you might be on to something with the heartburn or helicobactor thing. I notice them sprouting up after bouts of heartburn. I went to the dr. and she prescribed a swish and swallow with an antifungal and a lidocaine mix. It doesn't seem to work much.
amy 26 November 08
Paul try Sensodine toothpastes, these helped me dramaticly and dont contain the sls ingredient, i swear by it! Just ran out of my toothpaste and without thinking used my kids normal aquafresh(which has sls in) for a week and now have 5 ulcers, so thats enough proof for me, although what works for one may not work for another but worth a go!
Good Luck.
Vicky 15 February 09
What a great site! Only about 200,000 people have Sutton's Disease II in the States, and to see discussion is great. I have suffered from Sutton's for about ten years (I'm 22). The most effective treatment I have ever received for the out-breaks is a combination of Prednisone, Viscous Lidocaine, and any random pain-killer the docs decide to give me. As for the over-the-counter solutions, oral gels and denture gels offer a ton of releif, and using a 50% water 50% hydrogen peroxide mouth wash assists me. For prevention it seems staying unstressed and well rested is the only way I've been able to control the outbreaks.
Julian 3 June 09
The Squiggle toothpaste is what i use, SLS free! Also my teeth are looking whiter and I have noticed that usually my gums can look like ulcers are starting but they never form, just become sensitive and don't look nice, this has stopped as well! Going to try the mouthwash as well, the more lines of defence the better!
Natasha 30 4 June 09
I was refered to a consultant at the hospital by my dentist for treatment for Lichen Planus.While I was there I told them I had suffered for years with recurrent mouth ulcers,when they did a blood test they found my red blood cells were low and put me on ferrous sulphate tablets. Since then I haven't had any bad ulcers, my mouth somtimes feels as if one is starting but by the next day it is gone.Maybe this will help someone else reading this.
Beryl 10 August 09
I had anemia (anaemia) all my life until I eliminated gluten from my diet.
TomF 11 August 09
I had suffered from mouth ulcers for years. I had some routine bloodwork done recently and found that I have very low ferritin. My doctor put me on iron supplements and I have not had a mouth ulcer since. I would not reccomend taking iron supplements without talking to your doctor first though.
lee 30 September 09
I have suffered with ulcers for over 10 years now. Nowadays they are mostly at the back of the throat so Sutton's disease seems likely. Thanks for posting about it, shame there's no cure.
I control my ulcers (not that successfully) with a 2x daily gargle of Miracle mineral supplement (MMS) - I was immediately put off by the word miracle too but it does help- it's main use is to prevent the ever apparent ulcers from becoming infected. I am also trying every alternative therapy I can think of one at a time, most recent is acupuncture with Chinese herbs.
I refuse to believe there is no cure, it's just about persistence. Good luck everybody.
Matt G 2 October 09
I have suffered for years with mouth sores and was finally told to take L-Lysine (found in all health food stores or vitamin aisle at the grocery store). I take two a day and my sores have cleared up. If I miss a day I can usually count on getting a sore within a day or so. I have never been in to health food gimicks but this works and has made my life so much better. I've taken it for a couple years now and don't plan on ever being without it.
Lori 28 October 09
My son has had mouth sores and this is his 3rd time. I mean so severe he is admitted to the hospital. His neck and cheeks swell up and his lips as well. I have been to a demotrolgist and she put him on predinsone steriod and after a couple of days he was cured. The experience is HORRIBLE. I think it is canned oranges that are making this reoccur. We are currently using the Kenalog paste which is a small dose of steriod and he is getting relief but the reoccuring sores are just horrible. I have experienced canker sores in my mouth over the years but nothing oralgel from the store can't cure. His iare so bad he loses lots of weight, he can barely swollow and he misses tons of school. The dr had mentioned doing a biopsy on one of the ulcers but waiting to get into see her is impossible and she wants him to not have any steriod paste when she does it.. Ok! I can't take the chance of his mouth getting so bad his lips just dry up and bleed.. So, I keep giving him the paste... Never ending battle. :(
Carly31 18 February 10
I have been having mouth ulcers for almost 2 months now....never ending....I tried to guess which is the culprit but to no avail. Got to meet a Chinese whose children are into the naturals, one who is residing in San Francisco and the other one who just graduated and will be leaving pretty soon for the States too. I am from the Philippines....This Chinese was supposed to die about 10-15 years ago survived by switching to naturals...everything natural....he said this Suttons disease, whatever you call it, canker sores, is a systemic disease. He says it comes from seaweeds. I will still have to try them. He also told me to drink probiotics....something like yogurt. About chocolates....oh, well, I have been eating them lately but I just never thought it would give me any allergic reaction. I used to have canker sores but they only lasted for a week but this time, I was surprised that it never left me these past few months....but now, since I tried the mouthwash with baking soda (Want everything natural, no drugs please) it seemed to work....or is it because the stress has lessened. whatever, I am just sharing it to you guys out there who are suffering the pains....its really awful....
Baby Lou 19 May 10
My 1st huge outbreak was at age 26. Had small sores all my life. Going on 22 years now...Magic mouthwash (RX -lidocaine viscous 2%, diphenhydramine elixir, & Maalox liquid) numbs enough so I can eat and Vicodin (RX) for pain when it's so bad I can't sleep or eat and start loosing weight too fast. Most outbreaks last between 2-3 weeks but had them once continually for 8 months had a week off then another 5 months. That was 3 years ago. Since then I have 2-3 bad outbreaks a year but small sores break out aften. Stress does not seem to cause them but lack of sleep does. (Son-in law in head on car crash and month of his healing. no large sores. Sudden death in family, no large sores but if I have several nights of restless sleep or awake early too many mornings I'll start getting them.) Have done food journals, life style journal, tested for medical problems, and allergies. Twice at Mayo clinic for evaluation. I'm told I have a glitch in my immune system and they don't know what sets it off. I've been told not to donate my blood. I try to go on with my normal routine but have trouble when they are severe until I'm on the Vicodin, which I don't like to take. After 2-3 days of sleep and eating, I can go back to taking Advil as needed. This is just part of my life and I deal with it. I've learned you can live on the same soft foods like yogurt, applesauce, cottage cheese, watered down refried beans, mashed potatoes, etc. for many days. Pain is the problem so that's what I address so I can go on to enjoy my husband, kids, and grandkids :)
PS...I was told 26 years ago it could be "Sutton's Disease" but hadn't looked it up again until now
Donna 3 July 10
i cant believe i have finally found a real mouth ulcer website!!! OMG. i have suffered with ulcers for about 12 years, and i nearly always have one or two small ones. But then i get either bouts of clusters of small ulcers or else get the real big bad boys and it just seems lately they are hangin on for longer periods. i have now had oral shingles twice in the past month which was treated with Aciclovir 200mgs 5 times daily for 5/7 days, which cleared the shingles but not the ulcers, ulcers were always located on tongue and lower jaw area; shingles were in upper right roof of mouth. then when completed the aciclovir antibiotics the shingles tend to make a return! at the minute im on an 8 week run of ulcers which are huge, making speaking soo hard, and eating almost impossible. living on lukewarm soup, ice cream, ice lollies, lukewarm pasta, banana milkshake. have lost 2 stone which some people think is brilliant but now feel unwell all the time. am currently due to see a consultant for camera down throat and a camera up the rectum, (nice), gonna hve to be done under a general anaesthetic im afraid! whilst i think some of it is stress related (teenage daughter goin off the rails, but has now settled) im thinking mine is related to diet and perhaps a problem with bowel (history of bowel cancer/problems in family) or apparently now there is gut problems i hear that may be a factor also. the other thing is im actually so depressed b'cos of the ulcers, it is really getting me down. im quite a strong person, but have been whingeing quite a bit both b'cos of the pain and the b'cos of the duration of the ulcers.im frightened of losing more weight, will turn into a skeleton if this keeps up. im in shock that i have found a proper website, i have searched on the website for ages now!! PS the next time a well wisher tells me to use bonjela i think i will punch right in the mouth, i know its violent but am fed up with people who have abs no idea about ulcerations. tried abs everthing they have thrown at me to no avail.
Paula Mc 3 July 10
I never had a canker sore till after my 40th B Day
I figured out it was caused by an allergic reaction to nuts.
The sore comes out in the same spot inside my mouth
on the lower left side between the inner lower lip and the gum
also the gland under my jaw bone on the same side gets swollen.
The whole left side of my lower jaw is tender.
Before the ulcer apeared in my mouth I suffered from nausea and indagestion, and bloating.
That led me to strongly believe it was food related.
Anyone have these same symptoms and if so, any medicine advise.
Besides of couse stop eating peanuts.
Thank you. Sal Scalia. Miami
Sal Scalia 5 July 10
I have suffered from constant canker sores for a yeay. I went on a gluten free diet and they were gone within a week! I tried some gluten foods (wheat crackers) a few weeks later and I had canker sores the next day! The gluten free diet has made a HUGE difference.
Kris 16 August 10
Thanks so much for creating this website. I do suffer a serious ulcer problem, it gets to the extent that it is do painfull I struggle to get through daily tasks all I want to do is lie down. Managing my diet has helped with the severity of the ulcers, staying away from anything acidic really helps in particular not drinking orange juice.
Elle 21 August 10
I am also one of the suffers of mouth ulcers. This is fairly recent for me...only since being pregnant with my now six month old. It all started halfway through my pregnancy with him. Any time I eat anything acidic, get stressed out, or super salty I get a horrendous outbreak of ulcers on the end of my tongue. It literally looks like it is eating the coating of my tongue off. I have not found anything that helps with it, besides eating ice cream (which also helps with the stress). I would love for someone to suggest something natural for a remedie...I am not going to take any more medications that don't seem to be working.
Sarah 3 September 10
have any of you fellow canker sore sufferers also had a blocked/swolllen infected parotid (salivary) gland? swollen up like a tennis ball half. went on anticiotics. Also, I threw up a lot as a kid (cyclic vomiting syndrom) and wonder if anywone else had this too, esp as a child? trying to figure out, at age 20, what the heck this is and what to do?
carol 30 June 11
I have suffered from canker sores since I was 2 years old but only about 5 years ago did the outbreaks become unbearable. I am only 22 years old and I get hundreds of sores all over my tonsils, tongue, lips, and cheeks. It gets to the point where I cannot eat, talk, smile, drink, or even swallow my own saliva. I have been to every doctor: allergist, immunologist, ear nose & throat, gastroenterologist, searching for an answer. I have had a colonoscopy, endoscopy, allergy testing, test for Chron's disease and nothing came up. I have tried every over the counter pain relief (Kanka, Canker Covers, etc) and nothing relieves the pain. Switching my toothpaste and taking supplements does not help. I even tried a gluten free diet for about 3 months until I got a horrible mouthful of canker sores and decided it wasn't working. I have now been on methylprednisolone for over a year now on a regular basis (10 mg every other day) just to keep the sores down. Although it seems to keep me from getting hundreds at a time, it seems to make them more consistent and a persistent nuisance. I do not want to be on prednisone for the rest of my life (has very negative long term effects) but nothing else seems to keep the sores at bay. I am constantly reminded of the pain in my mouth and the embarrassment and frustration of not being able to talk to someone or open my mouth all the way. Why hasn't any doctor done the research to help canker sufferers? I empathize with each and every one of you and wish no one had to spend their life dealing with canker sores.
Lish 5 July 11
I stumbled into this website while researching for my mother. I feel so desperate to find a relief for my mother. She has been suffering from canker sores forever as far as remember and it has gone really bad last 2 years. She will get over 30 canker sores on her tongue at every breakouts and the breakouts are getting closer and closer together. She has been on various kinds of pain killers and antibiotics on and off for two years and recently got severe side effect from one of the antibiotics. Her face swelled up like a balloon and red spots all over her body. Emergency doctor told us that her liver test is abnormal (ALT and gama GT? were very high) and told her to stop taking any medications. Now, she's recovering from the side effects with more than 30 canker sores on her tongue. She had tried everything.. L-Lysine, SLS free toothpaste, salt water gargle, various kinds of ointments..Yet nothing seems to work for her...It breaks my heart to see her suffer like this...
Ally 7 July 11
Great web site! I started getting these mouth sores in High school I have been living with them for over 30 years. I have done all the things offered above but have found there is no pattern I do get a break some times and it last a couple of weeks then they come back with a vengence (sp?) I do find that if I take vit B complex this helps keep them down. I dont get why Dentist dont do more research on this looks like alot of people suffer from them. My poor son started to get them about the same age I did wonder if I pasted them on to him is it gentic? My husbad never got any so I know they are not contagious. Would like to see more studies on this!
Dianna 29 August 11
I'm 17 and I've had them all my life. I've tried everything. Right now, doctor has prescribed viscous lidocaine when they are down my throat I swish it around. It numbs my mouth, so I can eat food. I've even been told that the cause for them was the pH balance in my mouth, when I would get stressed out or near a big event, I would get at least 4. The dentist told me that I should constantly chew on gum. And so far that worked, till I would bite my cheek. Then get some canker sores. I've even limited milk and gluten from my diet, and that didn't even help. Ask your doctor for some lidocaine, or ask about magic mouthwash. Its gross. May make you want to throw up, but it works. Its a mixture of medication.
lindsey 30 August 11
I just started getting mouth sores and have searched the web for pain relief and a way to reduce the recurrence of them. Right now I have about 30 of them, a large group on the tonsils and back of throat making it ver difficult to eat or drink anything. They started shortly after a major illness in June and have been persistent ever since. Will be undergoing an endoscopy and colonoscopy on the 19 th of this month to explore any problems. Gastro Doc thinks it might be caused from excessive acids backing up during the night (GERD) and has prescribed protonix to reduce the acid. I do not drink juice, eat chocolate or suffer from stress. Any information is welcome, cures are appreciated.
Doreen 4 September 11
I used to get them all the time. A physician friend prescribed an oral solution that has
To be mixed at specialty pharmacies. It was a rinse composed of benadryl and prednisone solutions and one other ingredient I can't remember. I will find the bottle and try and post it. It worked extremely well
Marcus 10 September 11
It was tetracycline, benadryl, and prednisone rinse. All added to viscous lidocaine.
It worked extremely well. I hope this helps some
Marcus 10 September 11
I never knew that I could find so many people with this issue! I always had issues with these! Usualy when I bite my gums or lip or do anything to damage the tissue it brings them on. Recently I had bit my lip three times in the same spot. It really hurt! I felt like I pierced my lip! Well than that turned into one. After I bit my gums on the opposite side and now I have one there. Not only that but I literally felt one come in 10 minutes ago on my bottom lip again but the other side. I have just started a diet too and had a lot of lipton green tea, oranges, apples, plums, yogurt, that sort of stuff. I am in strong belief of it being caused by abrasions to the skin and citrus foods. OH AND STRESS!! I had like 7 at once from all the stress I had. It SUCKED!
Samantha 22 September 11
Try a
Try a Vit. E supplement it worked for me, almost never have cancer sores anymore.




Rose 12 October 11
My older brother has suffered from recurrent mouth ulcerations for as long as I can remember. I remember my parents bringing him to countless doctors including Rochester to no avail. On top of the ulceration comes OCD (obsessive compulsive disorder). Which in my brother's case, would cause him to apply pressure to the ulcer. The ulcer would be on the gum line, and he would apply pressure from the outside of the mouth with his hand to alleviate the pain. After doing this repeatedly and obsessively, it eventually broke through which led to having reconstructive surgeries, tooth extractions, countless hospital admissions, and a lot of heart ache for our family. My parents tried everything, including gluten free, hair testing to determine minerals that he lacked, you could imagine that over time these tests and trials added up. He continues to suffer in his 30's. I have never heard of Sutton's Disease prior to this internet surf. My heart goes out to you all.
lindsay 29 October 11
I am very happy to find a website that can help me determine the cause of my mouth ulcers. I have had them for about 10 years now and they come and go so randomly i can never find out why. This past week I had the worst case of my life and if it wasnt for Kanka I would have been in major trouble. Then I got on line and found suttons disease II. Now it seems to make some sense. I will now document all foods and try and find the root cause. Thank you all for your help.
Thomas 5 November 11
my mum and my brothers all suffered severe ulcers, they have a disease called Behcets Disease, thought to be an auto immune disorder. All have different food triggers maily chocolate and citrus. Might be worth looking into also...
Kerin 6 November 11
omg im in agony!! ive been having these mouth ulcers for about a year now<they are sheer agony,i have just found out im pregnant so they have flared up even worse,i have tried allsorts of treatments but once a course is finished they come back again ,i have been told i have low ferretin and am on iron not sure if it helps or not,my ferretin levels have raised but im still getting them,after reading here about the robinsons im going to stop drinking it to see if that helps,its the blackcurrent and apple fruit shoots that i drink!
janet 17 November 11
I have suffered from these mouth sores for 24 years. It has been really really painful as you all know. I tried many things. The doctor's don't call it anything. I usually find that Triamcinolone Acetonide (prescription) helps with the pain. I have used it for years. I actually sit and dot it on every sore in my mouth. This time however there were way to many to use it. I have used the "magic mouthwash" and that has helped in the past. I have tried taking L-lystine (sp). That helped for a while. I cannot tell you how much this website has made me feel so much better. I have gone to the doctor's today. I got Nystatin mouth rinse. I hope I get relief somehow. Maybe I will make a list of what everyone thinks helps and use them all.
bar6453 19 November 11
I too suffer from chronic canker sores, also known as aphthous ulcers. If you notice one side of your mouth is swollen and your jaw is tender, it's because of swollen lymph nodes. This is most likely caused by an autoimmune response. Mine are almost always caused by physical trauma to the gum.

For dealing with the pain, eating foods that give the ulcer a coating will help. Dairy products (yogurt, ice cream) do this very well. There are some great over-the-counter remedies, such as Canker Covers (http://www.quantumhealth.com/productgroups/canker_sore_treatment.html) that give the sore a cover to prevent it from stinging.
Chris 20 November 11
I almost always have at least one ulcer when I visit the dental. I've seen a doctor in SF who prescribed Clobetasol Gel .05% to be applied directly to the lesion. I don't mix it with Orabase. It will stop a ulcer in its tracks if I apply it often enough and soon enough. He also prescribed Prednisone (100mg/day for 2 days) for when they are so bad I can't talk or am in extreme pain. The worst ones are all over my tongue. Sometime I think I get them lower in my throat where its shockingly painful to swallow. This happened twice after surgery (breathing tube abrasion) and recently after a long vomiting bout. I've been dealing with this for 40 years.
okaycoral 21 November 11
We live in South Africa & my daughter has had ulcers since she was 3, she is now 8. A new dermatologist we are seeing is convinced it is Suttons Disease (also known as Aphthosis Minor) and is starting her on long term anti-malarial medication (plasmoquine), which he has read is also effective in treating the disease. It is an auto-immune disease, and so can not, as yet be "cured". However there appears to be good results in preventing them with this type of treatment. Side effect though maybe difficult to control so the next 3 months will be trial & error to try establish the least possible dose vs most effective results. Failing this drug, apparently the next one to try is Dapsone. Also, he has read that children, when on these long term preventatives, do in some instances seem to make a full recovery, although medically they can't explain why. Has anyone else been down this road ?
LVP 6 December 11
I have had ulcers in my mouth as long as I can remember, I'm now 21. Nobody has ever been able to explain them to me. When I was from 12-19 the ulcers tended to be all the time, not regularly excessively painful but irritating all the same. Nowdays, I seem to get them in two phases, december and may, but more of them and significantly more painful.
cat 13 December 11
Hi everybody,

I have been searching for a site that would be give me a bit more insight into what other people have been experiencing on this Sutton Disease front. I am still none the wiser but I know I havent got suttons diesease as this is my first batch of large ulcers in a long time. Anyway I would like to share what I have been doing in the hope that it might help somebody.

I came to my in laws place for Xmas and started using this acquafresh toothpaste I found in the guest bathroom and within 2 days i could tell something wasnt right as my gyms were sore. I went and bought trusted colgate toothpaste and it just got worse. I have now got about 13 or 14 mouth sores on last count. My upper and lower lip swelled up to be double their size. I believe I am on the mend now as the swelling has gone down and it has only been 4 days so far so am hoping to be rid of the lot soon.

I did some research and found out that acquafresh is notorious for causing mouth sores and the one common component in both toothpastes was SLS (sodium lauryl sulfate). I believe acquafresh has this component in spades and I have never had problems with colgate but acquafresh made me sensitive to it i think.

I would recommend everyone who gets lots of mouth ulcers to avoid toothpastes and mouth washes that has SLS. I managed to find toothpaste called sensodyn pronamel, which hasnt got sls.

Anyway i would recommend the following to help you with your mouth ulcers

1) Yogurt mixed with honey helps and tastes great
2) Take Vitamin B-Complex tablets (You can buy them from your chemist)
3) Use a soft bristle tooth brush and be gentle when brushing to make sure you dont cause any cuts to your gums
4) drinks lots of water
5) Use a mouthwash without sls to keep your mouth clean and the ulcers from getting infected
6) rub honey gently onto the ulcers to get relief
7) avoid any food that requires lots of chewing and that has bits that will go all around your mouth and onto the ulcers till you are on the mend - try soups, porridge, slightly overcooked vegetables like aubergines, mashed sweet potato, potato, butternut squash etc.

I hope this helps friends. I wish you all a great new year without this menance.

M
MT UK 30 December 11
Auto immune disease is the culprit drugs suppress it but there is no cure.
Spider Murphey 13 January 12
We all need to get together and figure out how to get rid if these infernal ulcers permanently!
Alexander MIlne 15 January 12
I have been suffering from these huge ulcers for about 4 years now. I usually get them on the inside of my lip, usually the bottom, which causes my lip to swell and my lip to look bruised. A few months ago I got them on the roof of my mouth, by my molars and they were just awful. The doctors don't have a cure and I have tried everything. I am considering a gluten-free diet to see if that is the problem. I have also heard the following, but haven't tried it yet:

ē Take a B-100 B complex vitamin supplement daily.
ē Try applying tincture of propolis, available at health food stores. Propolis, the cement made by honeybees to construct their hives, has remarkable antiseptic and healing properties.
ē Use DGL (deglycyrrhizinated licorice), a licorice extract with mucosa healing properties that you can buy in the health food store as chewable tablets or powder. Make a paste of the substance with saliva and apply it to the sore area.
ē Take slippery elm powder mixed to a paste with water; alternatively,suck on slippery elm lozenges, available in both drug and health food stores.
ē Topically apply alum powder, available in the spice sections of supermarkets, directly to an ulcer. It will burn for a few minutes and willpromote rapid healing.
ē Mind/body medicine, such as hypnosis or guided imagery, can be effective.
ē Probiotics (products that help replenish the friendly bacteria in the digestive tract) may also be helpful.
ē Try to minimize the discomfort of canker sores by avoiding acidic and spicy foods as well as abrasive foods such as nuts, all of which can be irritating.
ē Switch to a toothpaste that does not contain sodium lauryl sulfate (SLS), a foaming agent that may contribute to recurrences.

Hope this helps!
Laura 5 February 12
I'm a 70 year old female who has suffered from canker sores (Sutton's disease) since a teenager. I am currently suffering with an outbreak when I bit into my lower lip while eating. I also have one on my tongue. These are the things that I have tried:
*L-lysine supplements daily
*salt water rinses
*honey to coat sores
*Tylenol at night to fight pain so I can sleep
*allergy testing (I am allergic to dairy, eggs and chicken, tuna, gluten, corn, soy)
After eliminating these foods from my diet for two months, I continue to have canker sores. I will continue this very restrictive diet and see what the future months prove.
*SLS free toothpaste
*alum powder
I am a determined, hopeful, prayerful sufferer and will continue the battle as you are doing to find some relief until a cure can be found. Until then, we have the knowledge that we are not alone, indeed this website proves it.

NanaCarol 16 February 12
My lovely husband suffers from horrendous mouth ulcers.We have tried everything one thing that worked for a couple of months was chewing paw paw seeds.We were told about this from sufferer it worked for her unfortunately my husbands came back,we also had vitamin b12 injections it slowed them down some what but still gets them.A cure would be a God Send for all of you who suffer from them.My husband is 63 years old and started getting them after a nasty infection in his leg and gave up smoking 15 years ago.
Judy 17 February 12 17 February 12
I get them occasionally. I have had one for the last week and it is finally closing now. Trigger was me burning the midnight oil with work demands, which also leads me to neglect my vitamins and nutritional intake. I have found vitamins with folic acid to be helpful. A sublinguel b12, b6, & folic acid supplement may help. Trivita has a good one. Also, a sublinguel folic acid supplement may help. Superior source has a good one.
V. Williams 27 February 12
I had a hard break up with girl a few years ago probable 5 years now, Well 2 weeks after the break up, my mouth started breaking out in sores. I thought she gave me herpes and went to the doctor who just embassed me by yelling it out so everyone in the office could hear, Which i never went back lol. Here's what I'v noticed with this disease. My ammune system gets low i get sores ....nothing i eat has any bearing whether i get sores or not , i could be wrong (it's happened once or twice.) I'v noticed bad smell or odor in my mouth, and all these symptons all started within that two week period after the break up(meaning stress brought it on) The acids in my mouth have changed also. I try to keep rested to keep my ammune system up and it does help alot . It also seemed to calm down abit as time passed ...but that may be due to me staying rested
b.young 29 February 12
I notice any thing spicy and hot sauce would give me canker soars. I remember at one point I wasn't getting them but didn't realized what i was doing. All of a sudden I started up again. I was in the gym and eating differently at that period of time. I did read that canker soars is link to lupus. I remember years ago when i had my blood work done the doctor told me I was border line Lupus. I have all intention of re taking my blood for a yearly check up.
M. Young 1 March 12
I am 14 and I have had canker sores as long as I can remember. It stinks..... I am sooo glad am not the only one. I've tried no SLS toothpaste and I get them less often but still get them alot. I try to stay away from citrius which usaully triggers it. I also get them from biting my lip and being sick or being by someone sick. I have had them every possible place in my mouth and have also had them on my uvula. I currently have one in the back of my throat. It really hurts to eat or swallow. When I get one I usually take lysine and that usually helps a little. I use teething ge to numb up the area and quickly eat. I have never heard of Sutton's Disease. It gives me relief that I am not the only one. My constant prayers are with all of you that God will find a cure or deliver us from this disease if it is His will.
juJulju 17 March 12
Hi everyone,
Thanks to all who shared their experiences.
I am 43 year old healthy male and have never had mouth ulcers in the past. About 2 weeks ago, I felt that there is something 'sticking' at the back of the throat when I swallowed. It got a little worse and felt like sore throat. Went to the doctor and she gave me routing antibiotics. When I went to the doctor, I was already developing ulcers near the gum left gum line near molars. It was a long 'gash' or 'lesion' and was started to get a bit tender. Anyways, two days after my doctor's visit, the ulcers got worse and now I have them both side of the inner cheeks, gum line near molars, back of the throat and back of the tongue. They are SO painful that within 10 days, I have lost about 4 pounds. I cannot eat anything. Just the thought of eating anything hurts. I have tried lidocaine oral and nystatin swish and swallow with no effect. Doctor put me on predinisone but I believe the dose is too little (it was a tapering dose which starts out with 28 mg the first day and goes down the next day).

After reading all the above comments, following makes sense: I do bite my inner cheeks and have done more so since I took up golf. Also, for the first time, I used aquafresh toothpaste (although I was not on it currently when I got the ulcers). Recently I tried some really sour citrus fruits and that did not feel good. So could be a combination of all the factors.

Please share your experiences and suggest what has worked for you.
Sal from Houston, TX 7 April 12
Doctors are useless . I believe they have cures for everything they just want the pharmacies to make more money.
If a plane can stay in the air for five hours and internet,cell phones no string, it's not fair too many people are suffering I hate to see people suffer when the scientist and pharmacies have the answer some one is lying I don't buy it.
mary 14 April 12
I have had them all my life but for the last 10 years they have been really bad, I am 31. I get them all over and have tired lots of different doctors. I have even tried acupuncture and several naturopaths. I always use non SLS toothpaste but nothing has worked so far. As many people have said it is a wonderful comfort to read that I am not alone and will pray that we all kind find relief sooner rather than later from this terrible problem. Keep strong everyone.
Sarah 23 April 12
I am taking amoxicillin for treatment of acne. When I stop taking the medicine I have noticed I get sores in my mouth. One or two at first but then it becomes multiple and painful. Once I start taking the amoxicillin again within days the sores in my mouth are gone.
Clay 8 May 12
Im 25 and have constant trouble! The best relief I have is silver nitrate sticks which you can purchase on amazon.com they hurt but its a two second pain and the sores heal within a day or two. The silver nitrate somewhat burns them and they will not hurt any longer and it keeps food from getting in them and making them worse!
Jess B 17 May 12
I was told as a child I had a "High Acetic System" which was why I had canker soars and I burned when I would use the restroom. A doctor that my mom had taken me too, told my mother to have me drink 1 tsp of Baking soda with a small amount of water, and I NEVER had the mouth soars again. Maybe it is some type of home remedy but the understanding to this method is that is neutralizes the acid in your system. I hope this may help some of you.
Kristy Morgan 18 May 12
the blood thinner Trental got rid of my canker sores for good after suffering for 15 years. ask your doctor to look into it.
Anna Victoria 22 May 12
I am 46 years old and have been really suffering with cancker sores for the last year or so; they have become unbearable in the last 2 months. I cringe about thinking about eating. I have tried everything listed above and nothing helps. I dont want to just make them feel better I want to know why I get them and how to NEVER get them again! They used to be bad only during my period but know I get a new sore every day or so and I am not sleeping because of the pain they cause 24/7!!!!!!!!!!!!! this sucks
Debbie 26 June 12
I'm 27 now, but I've suffered since I was a child. I was always too ashamed to talk about it not knowing what it was. Recently discovering the existence of Sutton's disease and this website has really changed my outlook knowing that other people go through this. I had a conversation with my mom recently and found out that both her and my aunt had it as well.
My sores are predominantly triggered by any kind of biting although I have had some spontaneously develop along the gums or roof of the mouth where biting could not occur. Once a single sore develops I may get up to 8. I almost never chew gum because if i accidently bite the inside of my cheek I'll certainly get some. Ones that develop on the inside of the lip and the tongue are the worst for me, because in addition to the pain I get a noticably swollen lip or I'll slur parts of my speech which other people start asking about. During a very stressful period while on a submarine, I went several weeks where it was too painful to smile, talk, eat, or drink. Having no access to oral anasthetic at the time, I'd rinse my mouth with boiling hot tea. Not the best solution, but it did provide some level of numbing and reduced the swelling momentarily. I lost quite a bit of weight during that period.
I've found that when things are going well(less stress, no biting), I can go a few weeks without getting any. I've tried Lysine and taken it for around 3 months. It didn't seem to "cure" it, but I feel that it reduced the non-bite related outbreaks. Like someone else noted, if I forgot to take Lysine for a day or two, I'd get mouth sores. If you haven't tried it, it's worth a shot. I'd heard of a remedy involving putting an advil on the sore at night to help heal it, I tried it and it didn't work for me. The Kanka liquid is my drug of choice. When I get an outbreak, I keep it with me religiously. It numbs for a short amount of time and seems to aid the healing process.
I have noticed that occasionally when i get an outbreak, if i poke it with my tongue too much, the sores will start on my tongue as well. If I develop sores near each other, on occasion, they will combine to become a much larger sore which is more painful and takes longer to heal. Individually, the sores take anywhere from 1-2 weeks to heal, but the overall outbreak can take up to 3 weeks to resolve itself. Medical professionals haven't been much help. One doctor just kind of shrugged and said, "no one knows what causes it. try a salt water rinse." A dentist once pulled my lip out to look at it, starting poking it and asked "does that hurt?" I almost hit her. Thank you all for sharing your stories and I hope anything I've written might be helpful to someone else.
TJ C 27 June 12
Ive been suffering from mouth ulcers since i was 8 nd now m 21 stil no cure..i have dem now as we speak n dy r so painful i dnt no wat to use anymore... Ive also went to al sorts of doctors nd no one seems to knw how to treat dem..y so much suffering tho?
Mel 2 July 12
I'm 19, Female. I've always had ulcers but when I was 14 I woke up with lumps on the roof of my mouth that in the next day turned into very angry and very painful ulcers. I went to the doctors and they given me anti-biotics and a barrier cream that didn't really work.

I kept having big, small ulcers very painful and could hardly eat with them over the next 2-3 years, the ones that are the worst, are on the roof of my mouth because they take 2-3 weeks to heal and even then it stays a little tender.

When I was 17 I had enough and went back to the doctors with the same massive ulcers on the roof of my mouth and a couple of other small ones on my tongue, I seen a doctor that I'd never seen before and she wanted blood tests and it came back I had B12 deficiency, I was given bonjela to help with the ulcers . I had my B12 boosters and everything was okay until 4 months later I started to get ulcers again.
I had my bloods tested twice since then and they came back and my B12 levels were fine.

I then again had enough of the ulcers and went to my doctors, I had 2 on the roof of my mouth and 2 on my tongue, I even had 2 more on my lips which was horrendous!! He taken my bloods again and they came back fine. All he said about the ulcers is that 'some people are just prone to getting them' and he prescribed bonjela again.

And they came back again and again. A few months ago I had a massive on on my tongue and as soon as it went another one came up.

Yesterday (Sunday) I woke up and felt the dreaded lumps on the roof of my mouth and like always they rapidly turned into ulcers very painful and very sore. I called the doctors for an emergency appointment and got one.
I went in and told him everything, all my history with the ulcers. Like all doctors he took a look, sighed and said 'oh they just look like ulcers' I explained how painful they were and the thought of eating anything with them makes me feel queasy as it will hurt too much. Again he just prescribed bonjela and told me they should go away.

I'm so frustrated and at the end of my tether with it all, I end up crying every time I get my ulcers because I know I won't be able to eat and I'll be in constant pain.

Until I came across this page, I've read a few statements and such, I've done some research on Sutton's disease and I don't know if I may have it.

Does anyone think it's possible that I may be suffering with sutton's disease? If so what can I do to ease the pain? Has anyone got any help?

I would be extremely grateful if anyone could let me know some information about Sutton's disease and how they got diagnosed etc.

Not sure if I'm allowed to give my email address out but I'm desperate for help!
Nothing to loose, My email address is: Brioneyw@hotmail.co.uk

If anyone has the time and kindness to talk to me or offer tips, I would be eternally happy.
Thankyou!
Brioney McClean 2 July 12
I am 43 years old and have suffered from mouth ulcers for a long time. It seems that in the last few years, they have progressively gotten worse. I get them if I eat too many acidic foods...stress...or if I bite my lip or cheek. Currently, I am going through a bout with 3 very painful ones on my lower left lip. That is where I seem to get them the most. My lip will swell...get very dry and bruised. My lymph node under my lower left side will swell. My body sometimes gets achy. I get tired and run down. My mouth sores will usually grow so large and 'angry' that pus forms. Sometimes, I go for up to 3 weeks (during the particuarly bad bouts) and I just feel crummy....as if my body is working overtime to fight off something. Then they go away. I've come to expect them to return about once per month, though the episodes aren't always as severe (Thank God!). Like most of you, it's difficult to eat or drink anything. It's difficult to function sometimes. I have tried L-Lysine (not sure if that has really helped or not). For me, I just ride it out because whenever I've tried any remedies....my ulcers just seem to get 'angrier' for some reason. I've done some research and it's frustrating to see that the cause is not clear nor are there any permanent remedies. I have been given silver nitrate by my dentist before and that does help them clear them up quicker. I also stay away from regular toothpaste. I use one called Biotene, which prevents dry mouth (another canker trigger). I have never heard of Sutton's Disease II until today and I am grateful to have found this website. I don't feel so alone in my pain.
Katie 22 August 12
celiac disease and crohn's disease, Stop eating wheat, its poison, look into it, and take a 2 week gluten free challenge, I promise you won't regret it
Matt 30 September 12
I am 25 years old who has suffered from mouth ulcers since I was 7. I have noticeda rapid increase of them over the last 2years. I've also noticed a pattern where I get a bout every3months. Just 5months ago I had a bad viral mouth infection where ulcers appeared everywhere I had 16 in total atleast5 on my tonsils in a cluster and could not eat for atleast 8days. I am getting them more frequently but feel I've tried most things and nothing seems to work. I have one at the moment and I have been getting alot appearing at the top of my mouth which is a painful place as it affects eating etc. Thankyou for all your info
Leanne From Sheffield 7 October 12
i'm almost positive mine are caused by stress & sleep deprivation...have 2 young kids and broken sleep is the norm...when i'm well rested & hydrate well with H2O i have very few outbreaks...
Brock McCullough 8 November 12
I started to get ulcers when I was around 10 and they peaked at around the time I was in high school. I tend to get them in waves for like a month straight with 5 - 10 in my mouth and then have 2 weeks off. I have tried everything to get rid of them including, daily Lysin, avoiding acid, pro biotic yogurt and more. I currently use the silver nitrate sticks since it it better to have the few seconds of pain then to have the lasting pain of 2 weeks like usual.

I am interested in trying out the gluten free diet since it seems like it has worked for others. Anything to get rid of the constant pain.
Issa 30 November 12
I have lived with ulcers for 30 plus years now and think that I found a couple of things that help lesson the length and frequency of the occurrences . I don't know if this will work for everyone but it helped me. First, I stay away from popcorn! That is by far the worst food I can eat as the kernels make small cuts that always form ulcers. Second, I take a mixture of vitamins: B-12 and L-Lysine, I don't know why this works but the two vitamins work wonders. Third, if I do have a couple that prevent eating I use a q-tip with a little Bactine spray on it and it numbs the area for about twenty five minutes. I hope this helps others out there like it has helped me.
Thomas Luehring 30 November 12
wow i thought i was alone wit this one but i see everyone here is feelin my pain. ive had ulcers for aout seven years and i have tried everything.the meds ive got is prednisone. ive been gettin resent treatment for herpes but in the back of my mind i knew its not herpes im so glad to find this site now im gonna bring all this info ive got from here to my doctor. i never heard of sutton disease i dont think many doctors know about it either. s/o to TASHANA M. for puttin me on to sutton disease
keano 35 4 December 12
I only occasionally get them now. Switched to Tom's fennel tothpaste. Takes weeks to work, days to get used to it.. but then prevents them. In the midst of crisis...BENZODENT. a dental paste at least at night acts as a bandage.

I KNOW the pain of month long canker sores.
sarah 8 December 12
I found mine are related to nut allergy. It's the only symptom I get.
Amy 31 December 12
I tried coconut oil on one of them last night and today I barely even feel it! I am gonna try it on a small one that I see under my tongue. Hopefully this will also work for some of you.
Adriana Flores 13 January 13
Hi, I have been getting awful sores in my mouth for 2 years on and off, over the last six months they have been appearing ever three weeks. My hard pallate seems to come up in small lumps then these turn into 20-30 ulcers I then get them all over my mouth but never on my Tongue. Went to the docs had lots of blood tests all normal. I'm actually a gp myself but hadn't heard of suttons disease. I've been on this site several times and it has helped but I didn't feel I had anything useful to add until now.
I've tried changing toothpaste and using b vitamins and all the topical gels but nothing worked.
Yesterday I felt them coming up and started to get really angry, if I'm honest. I have read journals saying in severe cases you can use short courses of oral steroids, so I got prescribed 30mg prednisolone, i take it once a day for 3days only, a steroid used in asthma, bronchitis to reduce airway inflammation. I took it at 11am and by 5pm the swellings in the roof of my mouth had halved, this morning they have almost all gone. I'm so happy and relieved they didn't turn into a mouthful of canker sores and I don't have 2weeks of agony ahead of me.
Honestly this works, clinically it makes sense also, our ulcers are thought to be caused by an exaggerated immune response, steroids dampen this down and are powerful inflammation deducted.
If you speak to your doctor he may prescribe you a short course. I'm just so happy something works and so quickly.
Remember not everyone can tolerate steroids but if your young and fit and well otherwise you should have no problems, they can be given to children in much smaller doses if it's a severe case. I am a doctor myself and I recommend this for those suffering with severe recurrent sores, it really works. Good luck.
A.khan 21 February 13
I'm not sure if Sutton's is what I've got, but a little over a year ago I had a sudden explosion of canker sores (I stopped counting at 40, but there were more) my dentist & doctor were horrified but had no answers other than a mouthful of lidocaine right before eating. Since that time I seem to get regular outbreaks every couple weeks, sometimes only 2-3 but other time (like right now) a dozen or more. I did some research myself, and there is a relatively new treatment called Debacterol, that works somewhat like silver nitrate (chemically cauterizes the sore so it heals quickly) but is far less painful. He agreed to order some & use me as his ginea pig & I had my first treatment yesterday. He used it on over a dozen sores, and by 6:45 I was eating a bucket of salty popcorn at the theater & feeling no pain. The sores aren't completely gone of course, but this stuff basically deadens them to the point that they might as well be. The treatment only takes a few seconds (rubbed on with a q-tip type applicator), stings for a second (but no more than getting salt in an existing canker sore), and briefly leaves a bad taste in your mouth like ash (picture sucking on last night's campfire log). Like I said, only 1 treatment but so far my dentist & I are both pretty impressed with the stuff. I don't know who makes it but if you google Debacterol you'll find it. It is prescription-only, but if your doc is willing to try it I'd say give it a try.

My sincere hope is that this helps somebody out there, believe me I know what a nightmare these things can be.
Michael C 7 April 13
Hi, I'm 29 yrs old and have been suffering from painful mouth ulcers, lesions, canker sores for the past 4 yrs. this all started when I became preg with my 1st child. I've been to several doctors including primary care, obgyn, ER, ENT, dental specialist, dermotalogy and after being a giuenie pig for yrs the only medication that makes them go away immediately had been prednisone. It's amazing at how fast it works but then you have to deal with the consequences of coming off. Once coming off a coarse they start again withing 2 days. Anybody have any advise???? I just want to feel human again and think I'm the only person in the world dealing with this.
Kelly 23 June 13
Finally, there are others out there with the same 'disease'. I know where to come for treatment ideas, as I've done as much prevention as I possibly can.
Rhonda 29 August 13
As I read all these post, I just got the a knot of hopelessness in my stomach. I've been going to several doctors over the last 9 months but from I read type here's no end or cure to thus pain. My started me going to the dentist and got several cuts in my mouth when getting rays those quickly turned to sores. The sores filled my mouth and then my tongue. My tongue is now just a raw bloody mess. It bleeds so much it stains my teeth yellow. I can't eat and now the sores are down my throat and I can't even talk to my children or swallow water. Which causing more health issues. If anyone has found any kind of relief please reply. My Doctor calls it Sutton 2
leslie Palmer 29 September 14
I have been suffering with canker sores for the last 5 months and the pain is unbearable. I am on a medication for Psoriatic RA called Otezla. I saw my RA Dr today and he said that there is no link with the medication, and said I need to see my dermatologist or dentist for treatment. I am going to request that my doctor does blood work for Sutton's disease to rule out the possibilities. I currently use Cincinnati mouthwash, this helps with the pain. Today I am going to try Valtrex to see if I have any relief. Thank you to everyone who have taken the time to write on this blog, it gives me hope to know I am not the only one out there.
sheri 18 August 15
are there any other symptoms to Sutton's Disease in addition to the mouth ulcers?
Mary Margaret 19 June 17
Hi I'm Gary from Edmonton, I'm 41 and qas diagnosed with Suttons when I was 25. I first started to get the painful sores in grade 12 and missed the last 2 months and re do it. I was put in infectious disease unit at U of A because they at the time couldn't determine what it was. The following year I got it again but worse so they thought it was enviromental. I was given oral morphine for the pain. I always describe the pain as pouring salt on a cut or getting stung by a bee. I was to take the pain meds but have to wait 30 mins before eating but it always wore off before that and the big problem is u can't eat or drink anything and your body gets drained and for me end up in the hospital on IV. I finally got referred to the dental unit at the U of A and they dentist knew right away what it was and sprayed my mouth with lidocane a topical numbing agent. It burned like hell but I was able to eat and drink right after using it pain free. I would use it before I went to sleep so I could sleep. I was also prescribed prednizone which is a steroid to get rid of them. He said its basically a alergic reaction to stress or some unknown reason. So now when I have a flare up like the last couple days I just go to my dr's and get a prescription before it gets out of hand and I take it for a week. I take 4 pills for 4 days then 3 then 2 then one because u have to ween your body back off the steroids. Me as a male with this disease is rare because it mostly affects women but because I have another rare disease that affects my autoimune system I am unfortunately suffering from this as well. I have Kleinfelter syndrome which I have an extra X chromesone.
Gary Glover September 11, 2017 11 September 17
Hi ,

I am 25. I have suffered with this for all of my life. Most notably for the past 13 years. It is relentless and seems quite hopeless at times. I am hopeful though. I wondered if anyone wanted to exchange contact information, just out of solidarity and for encouragement. I often feel very alone when dealing with this, like many of you have expressed. It would be nice to have a friend with the same condition to talk to about it. Thanks.
AA 3 October 17

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Suttonís Disease II

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