Teeth and gums

First time in sending in a question have had Raynaud's and limited scleroderma for 5years but now having terrible pain and lumps in my jaw is this normal and any tips to help there is no help my GP no help been to see a dentist today and he has never heard of it only see my consultant once a year bit desperate now hope somebody might have experienced this many thanks

22 Replies

  • Perhaps this could be secondary Sjögren's and the parotid glands have become blocked up or infected due to your large or small salivary glands not functioning properly? Or else arthritis of the jaw? I get both of these intermittently as part of my Sjögren's. I believe about 20% or more with Scleroderma also have Sjögren's Syndrome.

    Might be worth seeing dentist again and suggesting they refer you to an oral consultant who can advise?

  • Hi thanks so much for replying the consultant did say maybe i have sjogrens has have dry mouth and eyes what you are saying makes sense if only they would warn you what might happen i only see a consultant once a year and a lot can go wrong in that time not seeing him till July and can't get an earlier appointment but have rang my dentist and he is going to refer me to a dental hospital

  • I have lots of problems with my mouth and teeth due to my mouth getting smaller. I hate having to go to the dentist, because they pull you cheeks all over the place trying to get in to work on my teeth. I have the pain in nerves coming down from my ears to my jaws. So different to yours. I finally have got to see the mouth consultant, in the next couple of months see what they say. I hope that you can get help. This is the trouble not many doctors know about out illness.

  • I have same problem and ended up lossing all my teath because of infections but mouth still gets smaller

  • Thanks for replying how long have you had this illness just wondering how long it takes to get to that stage have had my teeth aching now for 2years now this new pain it's quite frightening i hope you get a respite for a while not nice

  • Which kind of systemic sclerosis do you have? Does the mouth tightening occur more with diffuse than limited, for example? So many of the articles lump both kinds together and it is hard to learn the specifics.

  • I have Limited scleroderma my teeth gums ache most of the time and my mouth is a bit tight and now these lumps inside of my jaw i feel it's worse because you have no one to ask hope you have help thanks for replying

  • I hope you find some relief soon.

    I was just reading about calcinosis--little bony-like lumps of calcium that build up. They can be picked up on a regular, inexpensive x-ray. I think I might have a couple near the top of one of my arms. Very tender to touch and different than something in connective tissue or muscle.

    Might be something to keep in mind if they have trouble figuring out what the lumps are. I do not know if these occur in jaws or not. I have seen picture of them in xrays of pelvis, arms and legs. So much more information is needed for all of us.

  • Thanks for replying sound a bit like my lumps they are very tender i am making notes of all these options to put to a Dr when i get to see one

  • That sounds like sjogrens witch I have and it is your saliva glands sometimes it's the simplest thing that sets it of but is very painfully tell your hospital

  • Hi thank you for replying how often do you get these bouts is there anything you can to stop them

  • I haven't had a severe attack as they have it under some sort of control I also have scleroderma fibrosis lungs Reynolds the but the sjogrens can just pop up with eating something sharp like lemon or eating ice cream so I have learned to stay away from these things see what your consultant says the only thing they really give me is antibiotics to get rid of any infection hope this helps

  • I only see my consultant once a year and my GP doesn't know so you do feel on your own thanks for replying

  • I've had similar problems with my gums I was advised to use corsodyl ( not not sure of spelling ) mouthwash it does seem to help for a bit yo can buy it from chemist or supermarkets

  • Hi, I had the same thought as Twitchytoes - the lumps in your jaw are very likely enlarged parotid glands as a result of Sjogren's or sicca symptoms secondary to your SSc. Sjogren's is a common overlap condition with scleroderma, do you have the classic sicca symptoms of dry eyes and mouth? I suggest you call for an earlier appointment with your consultant and preferably get a referral to a scleroderma specialist if you're not already seeing one. There are meds to help with the dryness, but the jaw pain could be more challenging. Evoxac (cevimeline) stimulates moisture production which has helped me a lot. There are a few annoying side effects (45 minutes of sweating/chills after each dose), but they've been a small price to pay for having saliva again along with improvement with my dry eyes. Have you tried hot compresses on the lumps and ibuprofen for the jaw pain? Infection of the parotid glands may also occur and needs to be ruled out. Try to get in to see a specialist, and best of luck to you.

  • Are you in the UK? I used to take Pilocarpine for my dry mouth, but it has been unavailable since Aug 2016. I have never herd of cevimeline, can you get it on prescription?

  • No, I'm in the U.S. I hadn't heard of cevimeline before my specialist prescribed it, but it's been my miracle drug. It is by prescription. Pilocarpine/Salagen is similar, I believe. I've learned that cevimeline (brand name Evoxac) is commonly prescribed for Sjogren's here. Ask if it's a available where you are.

  • Thanks will ask my pharmacist, I certainly miss my Pilocarpine

  • I also agree with twitchytoes, sounds like Sjogrens with parotid gland infection. You need to get in touch with your consultant, don't bother with GP or Dentist, unless they can refer you to a Dental hospital quicklyBest of luck

  • Thanks for advice it's difficult getting a appointment with my consultant can't see me till July it does help this site as you know you are not the only one suffering thanks again

  • Its probably not the same but my salivary glands block easily and that is very painful. Also the muscle under my chin goes into a cramp, easpeciallly if i yawn and that hurts and is lumpy. What strange symptoms we get! I never cease to be surprised.

  • Hello, I have had scleroderma for 16 years and also have the small mouth. I too had lots of dental problems from the dryness and lack of circulation and had 9 teeth pulled by an oral surgeon. He had a great deal of trouble getting them out. I then found a new dentist and I started using a tooth paste with peroxide that is mostly used to get teeth whiter but it improved my teeth and gums a lot. I also use ACT anticavity rinse every night before bed after brushing. For about 3 years now I have not had a cavity. Good Luck!!

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