Mouth and lip soreness: I have Sjogrens... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Mouth and lip soreness

janetfmauk
janetfmauk

I have Sjogrens for many years but for the last 3 years my mouth has become very sore now that has been added to by my lips gradually becoming drier and now very sore to the point that I recently needed an antibiotic because my lower lip had become infected. I think the infection has cleared but my lips are still constantly ulcerated and extremely sore. The upper lip besides being very dry is now developing what looks like a blister/ulcer. A few days ago my dentist wouldn't touch my mouth once he had taken a brief look because it was so bad. He prescribed a Benzydamine spray which numbs my mouth but is not having any effect on my inner lip. I use a lip balm based on beeswax and made by a small firm in England - all it does is ease the driness and stops my lips sticking together. I have been told that the soreness of my moth is due to Mucositis - I am not on nor ever had chemotherapy which is apparently the normal cause of Mucositis. However I am on quite a lot of tablets and medication for a number of conditions but nothing new for over 12 months. Does any of this sound familiar to anyone and if so have you any suggestions as to what might help. TIA

33 Replies
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As a sufferer of Sjogrens for 30+ years, I too had troublesome lip ulcers and had 2 tips that have helped 1. avoid lip licking(difficult when your lips are so dry) and 2. take a regular B complex vitamin. there are a number of preparations containing all the B complex vitamins. I took one daily for several months with no further lip ulcers and now just take one or two a week with no relapse. BobC

Thanks for the reply fortunately I don't lick my lips - very sore tongue. I had to stop taking Vit B a while ago as I had too much in my system. I possibly need my GP to repeat the blood test and see if my Vit B levels have dropped too low.

Hidden
Hidden

Hi Janet - This may seem like a silly answer, but it seems to me that oil pulling would help you a lot. Oil pulling is not well known to many people, but it is an Ayurvedic technique that really does work well.

Take a tablespoon of organic oil (I prefer coconut, but you can use olive oil or whatever you like the flavor of), and put it in your mouth. Swish vigorously for 20 minutes through all of your teeth and gums, then spit into the trash.. Don't swallow it as it is now loaded with debris and bacteria. Also, don't spit it in the sink. Coconut oil hardens at 75 degrees, and that can mess up your pipes.

Then put some oil on your lips and brush your teeth thoroughly and gently (the oil on the lips will help them not to split while you brush). Then gargle and rinse with a mixture of 1 tsp. to 1 cup warm filtered water. The reason for all of this is that coconut oil is antibacterial and healing and it will help take the infection out of your mouth. The salt water is also antibacterial and healing. Do this 2 - 3 times a day (before bed is a great time to help you heal while you sleep), and keep some coconut oil on your lips to help them heal. One other benefit you will have doing this is that your dentist and dental hygienist will love what it does for your gums..

Best of luck with this, and let us know how you do.

Thanks for this, I have tried coconut oil in this way a while ago but found it made no difference it could be worth trying again. The salt water is a no go as it is just too painful in my mouth, I have had to stop using even small amounts on food and my husband, who does the cooking, has had to reduce it in the actual cooking - it is not only too painful but makes my mouth flare up.

Thanks again for your help I really appreciate it.

Hidden
Hidden in reply to janetfmauk

I'm sorry that you are so sore. That really bites (no pun intended)... Here's sending you gentle hugs

Thank you very much for the gentle hugs.

Hidden
Hidden in reply to janetfmauk

Oh dear this puts my oral problems in the shade. I wonder if this might be the extreme end of burning mouth syndrome (BMS) which I have and my sister has too? It’s a form of small fibre neuropathy I believe and a kind of living hell for many sufferers. Very like Trigeminal Neuralgia in pain terms.

I have actinic cheilitis and have also tried many things for it over a lifetime. Lately it’s been much more painful with one particularly nasty lesion that took me to the dermatologist in case it was a squamous Cell Carcinoma. She doesn’t think so but will see me again in August to monitor its progress. dermnetnz.org/topics/actini...

Meanwhile things have dramatically improved with my burning mouth (gums and lips for me) and lip ulcer. I can only think this is due to changing from Duraphat toothpaste - which I’m prescribed - to Dr Organics Tea Tree and Aloe Vera toothpaste which I bought in Holland & Barrett a while ago. I have tried changing to organic toothpaste, oil pulling etc previously with no luck but this time I’ve stuck at it for much longer and also opted for the tea tree one rather than previous pomegranate one. I’m of very allergic disposition and, prior to diagnosis if Sjögren’s, had gone to my new dentist pleading for him to remove all my fillings in case this was causing the terrible BMS. He refused but referred me to oral medicine at the nearby dental hospital and I was given a lip biopsy - 100% positive for Sjögren’s.

It might be worth trying the Dr Organics toothpaste if you can bear it - the tea tree is strong but it does seem to have worked🤞🏽

janetfmauk
janetfmauk in reply to Hidden

Thanks

I use OraNurse toothpaste - have to buy it via my pharmacy - it is non-flavoured and the only toothpaste I can tolerate having tried many.

I looked at BMS some time ago and it didn't fit.

I've been dealing with that for awhile but didn't relate it to the Sjogren's. I guess that our symptoms/issues are probably all somehow related. Anyway, I get great relief from a Homeopathic treatment called Natrum Phos. It is just sodium phosphate. An acupuncturist recommended it. Check out 1-800-Homeopathy. I don't think its entirely a dry lip thing but comes from a reaction to what I eat. I notice that if I eat plain natural foods, my symptoms are minimal. But I had Chinese recently and that flared up my mouth sores and "chapped" lips. I think its the soy sauce which has a wheat component. I am otherwise gluten-free because of digestive reasons. High acid foods and coconut produce similar reactions along with eczema. Mine is definitely not a reaction to dry air, sun or wind. Fish oil tablets and avocado may also help. I take regular B complex so don't know what effect that has. Oil pulling seems to help a bit too. But nothing like the relief with Natrum Phos. I can actually feel the results within about 30 minutes. I take it 3-4 times a day while it is flaring or if I sense a reaction happening. p.s. my aunt was just diagnosed with Burning Mouth. Her doctor won't acknowledge it as an allergic response.

Hidden
Hidden in reply to SusieW2

Interesting discussion (although you guys with BMS have my empathy - it sounds absolutely painful.). Thanks for the information

Thanks Susie, I will try Natrum Phos. I used to use a lot of homeopatics as our pharmacy stocked them but they haven't stocked them for some time. I still use things like arnica.

It was the Sjogrens that trigger mine but my mouth and lips are described as being Mucositis which is usually what people with cancer chemotherapy get - I have never has chemotherapy.

Thanks again

SusieW2
SusieW2 in reply to janetfmauk

I'm keeping my fingers crossed that you get some relief. Let us know please.

Glycerine on a mouth swap can ad moisture to your mouth and saliva; I've also suffered dry mouth with disastrous results on my teeth, in the form of brittle and breaking teeth cavities etc.

Thanks for the sugestion of glycerine it is certainly worth trying. My teeth are in an awful state as well - I have a front tooth that is only just hanging on and both the dentist and myself doubt that I would be able to wear a denture due to the soreness of my gums and the fact of the bone having gone in the gums.

Hi Janet

I read all the posts. There were so many good suggestions and I’m sorry you weren’t able to try them. What about Zinc tablets? My husband suffers terrible sores from dental work and mouth injuries like biting his inner lip or cheek. His dentist suggested this until the injuries are healed.

Also what about medical grade Manuka honey? It has many uses for healing in the medical field.

😊🌸

SusieW2
SusieW2 in reply to honeybug

I'm focusing more on eliminating things that create problems, balancing my body in terms of hormones, acidity and nutrition, probiotics for more efficient digestion, exercise and stretching to release toxins in muscles, etc. I was fortunate to find a Naturopath doctor who was willing to prescribe low doses of a thyroid hormone and testosterone, I was "low normal". We're hoping to reduce the bone loss and preserve teeth & jaw and increase muscles and stamina. Along with taking maximum Vitamin D3 has greatly lessened my fatigue.

honeybug
honeybug in reply to SusieW2

Best wishes for relief.

😊🌸

Thanks for your suggestions - my lips have gone worse before I have been able to try anything - I live in a village and haven't been able to go shopping yet to get anything. I think my bottom lip has become infected again and the top lip is extremely sore and going worse so I will wait to see my doctor on Tuesday.

I asked my pharmacist about glycerine and he said it wouldn't be any use for my lips. Looked at Natrum Mur when I went to the Health Food Shop and we couldn't find how it could help my problem and they couldn't suffest anything else.

Probably asking my GP to check my Vit B levels will be the next step as last time they were checked they were too high.

SusieW2
SusieW2 in reply to janetfmauk

I get my Natrum Phos online at 1-800homeopathy for only about $10 per jar of 500.

Hi I’m new to the forum and have a similar problem to you so know how awful it can be. Have you tried biotene gel? They sell it in boots I get it prescribed by my doctor it really helps and instantly soothes the mouth and lips althoug relief is short lived. I have hypothyroidism as well as Sogrens and I find my mouth is worse when I’m hypo and need an increase in meds. Hope you get some respite, good luck x

SusieW2
SusieW2 in reply to rosserk

Yes, thyroid medication helps, especially with the fatigue.

Hi Janetmauk.

I feel for you as my lips have become so sore and feel forever burning and appears to have some type of something gradually takingover. I have Amolin cream constantly on my bottom lip and below. ..gives a tiny bit of relief.

I am seeing a facial and oral surgeon in the next couple of weeks and if anything worth sharing shall post for you. It is painful and I hope you are ok.

To update you as to what is/has been happening to me. On Tuesday I went to see my regular GP about the lung function tests I had last week and the results of a sputum test that I had also last week ( I have had 2 possibly 3 chest infections since the beginning of the year and get breathless very quickly). However her first words to me were 'what is the matter with your lips!!' I explained what has been happening and she agreed they were infected. The outcome of it all - lungs and lips were a 3rd line antibiotic (my 4th this year- not good) and to eat probiotic yoghurt, steroid cream for my lips but only to be used after I saw my dentist on an emergency appt, a blood test for everything including VitB and thyroid, a referral to Respiratory and Maxillofacial/Oral. She asked me to call her when I had seen my dentist.

I saw my dentist yesterday who admitted he had never seen anything like my lips before and when I asked what he thought was 'nothing' but he did say to use the steroid cream. He was actually as helpful as he could be and spoke to the London Hospital I have been to re Sjogrens who said make a new referral he is doing this and also a referral to our local Maxillofacial dept - so between him and my GP hopefully that will come through quickly - I do not really want to travel to London as I got bad Pendilino sickness last time due to the movement of the train. At the end of the appt he asked me to ask my Pharmacist if any of my tablets could be increasing my dryness.

Thus I went to see my pharmacist for the second time yesterday as I had need advice on the antibiotic - he is very very helpful. He helped me get rid of some moth drying tablets 2 1/2 years ago. He looked up my tablets (I take a lot) and found one that causes dryness and I am prepared to try without it but I can't come straight off. Thus tomorrow I will talk to my GP after surgery and update her and ask how I reduce these tablets.

The good news is that the steroid cream has improved my lips very quickly.

SusieW2
SusieW2 in reply to janetfmauk

Wow! That's a lot. Be careful about the steroid cream long term as it can actually thin the skin. Sounds like people are taking you seriously, finally.

There are taking me seriously but don't know what the problem is. The steroid cream has taken the worse of the swelling away but there is still evidence of infection despite the level 3 antibiotic and they still look sore. I only use the steroid cream twice a day and as long as I don't talk for a while after I put it on I avoid the horrible taste! I will only use the cream until it is no longer doing anything.

I have been taking thyroid tablets for several years but still get fatigue - it could be due to the auto-immune conditions and fibromyalgia that I have.

Thanks for your concern and care.

Dear Janetmauk.

I feel for you so much and thank you for sharing.

I have 3 days left till I see oral facial surgeon and hoping for relief and answers. Keep us posted please xx

I used to get cold sores quite a bit if out in the sun for a while. I've found L-Lysine (supplement) to be a big help. As soon as my lips start to feel sore, I take 3, then 3 x3 a day. I try to take one a day. but some times I just get tired of taking pills and cut back.... I don't know if this will help. It might as this month, I'm getting those, extra dry mouth, gums are sore and a rash. Maybe it all goes together.

Thanks for this Misstazz. After I used the steroid cream for just over a week my lips did improve but never completely healed and would bleed. At the end of last week when it seemed I had just about got there the bottom lip has swollen gone sore and the top lip is tight and sore. There are sores with a white covering on both lips but as yet they have not broken out like before or become infected. I go to see a consultant 3 weeks tomorrow and hopefully he will be able to identify the problem as both my GP and dentist are mystified.

I will look at L-Lysine.

Today I went to Maxillofacial Oral at my local hospital and saw someone who recognised what I have got - ended up with 2 diagnoses. His immediate reaction when he saw my lips was that I have Stevens Johnson Syndrome - which is very rare but he had recently seen another patient with it. He eventually examined my mouth as well as diagnosed Erosive Lichen Planus - I was diagnosed with Lichen Planus several years ago but since been told I didn't have it. Either way the treatment is the same - a steroid paste to be put on 4 times a day for 4 weeks. I will not be able to start it until next week as the pharmacy have to send away for it to be made up and it will be after the weekend before it arrives. When I go back in 5 weeks time I may be put on steroid tablets - something I am not keen on from past experience but it may be necessary to have them.

Apparently what appeared to me and 2 GP's to be an infection was never an infection but just the way it manifests itself. I did stop the steroid ointment after about 9 days but after improving my lips are slowly going back to how they looked 2 months ago.

I've started having serious burning on my lips. I was wondering if it was caused by my sjogrens. Sounds like it is. I haven't seen my doctor about it yet. I checked in here first... lol

janetfmauk
janetfmauk in reply to DonnaV

The first reaction of 2 good GP's was that my lips were infected but because they looked so bad my usual doctor and dentist both referred me. I had tried to talk to a registrar about my lips but was ignored. Unfortunately they had to get bad before I got anywhere but I would suggest nobody could have diagnosed them before they became seriously ulcerated and crusty. Hope this helps.

honeybug
honeybug in reply to DonnaV

Hi DonnaV 😊🌸🌿🦋

I have SS too. I get this symptom whenever I’m going through a GI flare up. I suffer with IBS mixed GERD food allergies and intolerance and includes meds problems too. All of it combined creates burning lips sore tongue and GI misery. I it has to run its course with me. I do have to watch and eat a bland diet take my stomach aids eg acid blockers and gas tablets. I eat Greek yogurt to aid in resetting the healthy bacteria and I also take daily probiotics.

I have these flares at least 1 or 2 times a month. Make sure you stay well hydrated and avoid salty foods as they will make the burning much worse.

I hope this was helpful and you get relief soon.

😊🌸🌿🦋🤗💕😘

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