Jaw pain

[Newbie73]

Have any of you had RA Symptoms if your jaw? I think I have just started to but nurse thought it was unusual…

I was only diagnosed earlier this year and was started on 17.5mgs of MTX. Was still having issues and this was increased to 20mgs MTX 10 weeks ago.

I am tolerating MTX really well and the nurses put my folic acid up to 3 days a week due to mouth ulcers and I am much better. No other side affects.

I always have aches in several joints that take it turns to move up to throbs, the increase in MTX has not made any difference. The plan was for me to have a f2f end November/early December and if I was still experiencing joint symptoms they would look at adding hydroxy.

Last week for the first time while eating lunch I had pain in my jaw. TMJ. It came on without warning and was visibly swollen and red. Just in the one side. Next day was fine, came back the day after. My other side was beginning to feeling tighter but wasn’t swelling the same. It felt like I was clenching my jaw but I wasn’t if that makes sense.

It is now happening every time I eat and for the first time this morning was sore when I woke and before I had eaten. At rest both side feel tense as if someone has wound them tight.

Rhuemy nurse was lovely and is getting advice from consultant as it’s not that common with RA apparently. More common with psoriatic arthritis which I don’t have. My RF and anti CCP where very high on diagnosis so definately have RA. Don’t think I was checked for any other auto antibodies though as my GP suspected RA at my first consultation.

I’m currently on quarterly blood tests so last tested end of August but my inflammation markers in July / august were normal. Overall I feel the same now as I did then so wouldn’t expect my bloods to come back any different if they were to be tested. Just didn’t expect new joints to join the RA party….is that naive?

Thanks , any knowledge /experience with this gratefully received.

Thanks

[Amnesiac3637]

Hi. 33 years ago this was the first symptom I had of what has been severe and refractory RA. I woke up one morning and couldn’t open my mouth properly, my jaw felt tight and strained on one side and then it progressed over the next few weeks to both sides. Incredibly difficult to eat properly or shout at my husband (who was thrilled that I couldn’t 😄) and I went off to the the GP who initially sent me to the dentist. He sent me back and then my very good GP started taking things seriously and the bloods came back very positive for RA. By then, just about everything had swollen up and what didn’t hurt didn’t work. The RA consultant at the time wasn’t surprised that my jaws were affected as the tmj’s are very prone to inflammation. Over the years I’ve had practically every drug ever invented and my jaws have rarely been affected again as the inflammation has mostly been under control.

So do hope you have a resolution to your problem but it’s not unknown and can be vastly improved as soon as you’re on the right drugs.

[Newbie73 in reply to Amnesiac3637]

Thanks for replying, I do appreciate it.

I’ve been quite lucky really and I do think I am nearly there re meds. I just wasn’t expecting it in new joints and didn’t know it would go to your jaw - stupid I know.

Nurse mentioned adding another med or moving to MTX injections as they are more effective. Waiting for her to get back to me after speaking with consultant.

[Welshwomanprestatyn in reply to Newbie73]

yes I started with this symptom in my jaw it tend to come and go very quickly I have meds that control my RA but if it flares the jaw is the first sign

[Newbie73 in reply to Welshwomanprestatyn]

thank you.

[sunnyweek]

Yes had it in my jaw. Very painful and swollen couldn't move it much. I remember sitting at work resting my jaw in my hand. It did go after a few days but like you say unexpected in the jaw. I was having a stressful time when things flare. Hope you're soon improved and meds keep working.

[AgedCrone]

She must have been a new rheumy nurse…jaw pain, especially early after diagnosis, seems to be one of the most common pains.

[Newbie73 in reply to AgedCrone]

thanks im reassured now it’s definately my RA. and if she remains confused (she was lovely btw) I can be firm if needs be to make sure they either investigate with a scan or look into increasing or changing my meds. I still take naproxen daily anyway and it still happening so I think my RA is quite active but much less then than when I was diagnosed as my pain is a lot less severe. MTX is defiantly having a positive impact just needs something more I think.

[AgedCrone in reply to Newbie73]

Of course it could be something else…see what you rheumy says to your nurse.But TBH I think it’s just something you work your way  through.I never had any scans….just progressed through the various DMards until  I got settled on the right drugs for me…there are no short cuts I’m afraid.I don’t think there is anything physical   that will help…unless you have a blockage in your salivary gland….& then antibiotics are usually prescribed in case it’s some sort of bacterial infection causing the pain….but I think that is rare.Hope it resolves soon…I remember how miserable it can be. 

[Newbie73]

thanks sunnyweeks. I am pretty new to this and before I was diagnosed kept dismissing everything, hips hurt thought I needed a new mattress, shoulders hurt, huskey puppy was pulling on his lead so he go the blame. When nurse said it was unusual with RA and she needed advice from the consultant I was worried I was being dramatic and being a pain.

[sunnyweek in reply to Newbie73]

No you are not being dramatic. Think its pretty common to think the early pains are something else. The jaw is a joint so no reason for it to be uncommon, hard when its difficult to eat though, as bang goes the comfort food for a bit! All the best for your new journey, please ask anything on here.

[Sheila_G]

Hi. Yes I have RA in my jaw. I have had times when I couldn't eat because I couldn't open my mouth. I had to force my mouth open with my fingers to get food in. It was very difficult. Fortunately, it hasn't happened for a while now but I do have a problem when visiting the dentist. I have a small mouth to begin with so opening my mouth wide isn't possible. My dentist is very understanding and lets me have lots of rests but it can be quite difficult and uncomfortable.

[Newbie73 in reply to Sheila_G]

thanks for sharing with me. I’m not as severe as yours was thankfully.. But it’s happening every time I eat now and some swelling is remaining between meals now. Hopefully the consultant will advise the nurse that it is quite common and amend my medication in some way to dampen my immune system a little more to stop it.

[chif]

Ive had RA 30 years. 3 x I've had flares in my jawa and unable yo open my mouth. Took steroids for 5 days and helped. Yes jaw has joints so you can RA flares etc any joint at some point.

[Newbie73 in reply to chif]

thanks chif, really appreciate you coming back to me. I’m more confident the consultant is aware of tmj issues with RA and have a plan, the nurses comments threw me. It seems from this forum where there is so much experience that my RA is following a well trodden path

[chif in reply to Newbie73]

Your welcome, sorry with the spelling I was riding in a car. I've also been a nurse 28 years in the USA, with a great rhuemy who has been in RA research his whole career. RA treatment has come a long way, but alas, it's still autoimmune and can rear it's ugly head wherever it wants. Hang in there ...

[Runrig01]

I have ankylosing spondylitis and suffered severe jaw pain along with tongue pain early on. I was referred to an oral medicine consultant, who confirmed it was due to my inflammatory arthritis. He referred me to a physio who specialises in jaw pain. She taught me how to do massages in the area, along with specific exercises to do. They also provided me with a guard to wear on my top teeth, which moved the jaw into a relaxed position, as like you it felt tense. MaxFax specialists are not really any use as they are really surgeons. Unfortunately Oral Medicine Consultants are few and far between, as they have trained as both dentists and Drs. So you need to travel to a large city to see one. I seen a Prof in Leeds and a consultant at Guys in London. Hope you get it settled soon 🤗

[Newbie73 in reply to Runrig01]

that really interesting. Not happy to read that the tongue gets itself involved though! I live in Manchester so not far from Leeds if I ended up having to go down that route.

I must admit before my diagnosis I had no clue about autoimmune and inflammatory arthritis. Very steep learning curve but this forum really helps.

thanks

[Runrig01 in reply to Newbie73]

you may not get the tongue symptoms. I had vascular lesions appear on my tongue, and would get spasms where it would roll together, or would get bizarre clicking in timing with my pulse. At one point they considered vasculitis, but the conclusion was that my jaw area was quite tight and that nerves and vessels were being pressed by the inflammation from the jaw. I also had chronic inflammation of the sinuses from it all, as well as pulsatile tinnitus. I was told how I presented is quite rare. It has only ever been controlled by dmards, initially Azathioprine and now MTX. I take 25mg MTX, but as soon as I miss doses the symptoms return. I recently had sinusitis so missed a dose, followed by currently omitting 2 weeks following covid vaccine. So jaw and tongue pain havd returned. At the moment the tonge feels like it’s been badly burnt, and has loads of minute blisters round the margin. So I can’t wait to restart MTX next Wednesday. As I say the tongue symptoms are apparently unusual so hopefully you won’t get them. They used to keep me awake with the twitching and clicking, testing my sanity at times 😂🤗

[Newbie73 in reply to Runrig01]

poor you. Sounds very painful. Hope the MTX kicks back in quickly.

[grumpygirl]

yes, early on when my RA was poorly controlled I had quite severe jaw pain on both sides when opening my mouth and when trying to chew. I resorted to soft food for a while. I had pain in just about every joint you can think of. GP put me on steroids and eventually got much better when put on hydroxy, leflunomide and MTX. it might be unusual but it definitely happens.

[Newbie73 in reply to grumpygirl]

they were already thinking of adding hydroxy if there was no change at my next f2f. Jaw involvement may just bring that forward. I do feel I’m being well liked after by the nurses helpline and I forget my first Rhuemy consult was only in early March it seems ages ago already.

Thanks for replying, appreciated

[Sunshinereturns]

Yes I have experienced this. One year in. Lasted two days and I felt very upset. You wonder what else can happen with it flaring up everywhere!

[Newbie73 in reply to Sunshinereturns]

defiantly. Hopefully I won’t find out!

[janmary]

You’ve had some great replies - just to say that Ive had inflammation in my jaw too - absolutely horrible! Looking back over the years I seem to have had inflammation in more unusual joints - jaw, hip, when on holiday - not sure what the link is.

[Newbie73 in reply to janmary]

I know everyone is really helpful. Me too my knees should and feet were the initial problem areas me knees and feet kept me from sleeping. It took over 3 months for my fingers to joint the party which is what eventually sent me to my GP. I was getting private physio for shoulders and tight calf up until then.

Last 2 bloods inflammation was normal (July and mid august) but still had joint symptoms so was getting confident I was getting it under control and I was one of the lucky ones.. I expected it to stay where it was and eventually I stop taking naproxen and paracetamol (pain didn’t warrant me taking the co-codamol) and using prescription gel on wrists. I did not expect it to venture into new areas and when the nurse said it was unusual I started to doubt myself and maybe it wasn’t RA.

To be fair when they upped my folic acid early September and said my last blood unflammatory markers were normal I was a little disappointed as I wanted them to reflect how I was feeling she said. We treat the person not the bloods.

[janmary in reply to Newbie73]

My inflammation blood markers never reflect my level of joint activity - although I'm sero-positive . fortunately my rheum team go by my symptoms not my bloods

[Evie3]

i had that many years ago and my GP injected cortisone in the joint just below my ear, which sorted it. I think most of my joints have been affected over 40 years. Pleased u can tolerate the drugs

[Hidden]

Note my diagnosis is Stills Disease which for me manifests as RA.

yes I had jaw pain during the early years but it faded and 40 years on is now rare for me but reacts quite well to pain relief.

[Newbie73]

I have not come across stills before. There are so many. Appreciate you taking the time to reply to my question.

[Otto11]

Hi I have only experienced this once & it was a few years after diagnosed. I woke up one morning & couldn’t open my mouth. I could only drink through a straw. Pretty scary. I was on holiday at the time so went to local A & E. They gave me steroid tablets for a week but 2 days later it had totally vanished. That must have been about 20 years ago & touch wood it’s never returned. I do however have Osteo arthritis in my jaw now though noted on a scan for neck problems. It’s strange isn’t it? Hope yours settles quickly x

[Newbie73 in reply to Otto11]

thanks. Me too. Still going strong today, let’s see how it feels about a jacket potato!

I’m certainly not a severe as yours was though. Hopefully will get on top of it before it does.

[Otto11 in reply to Newbie73]

Hope things have improved a bit for you.x

[GinnyE]

Yes, I've had jaw pain. It frightened me, but it went away. Good advice has been given here. Hope it reassures.

[LinaM]

Yes … tho I have suspected psa. I have to exercise my jaw ( running tongue from one side mouth to the other inside and then outside teeth , upper and lower ) every morning or my jaw seizes up. It’s such an unpredictable disease .. no telling where it’ll pop up next but I definitely find exercises help .

[Newbie73 in reply to LinaM]

will give them a go thanks

[Pulfs]

I get this in my jaw and it’s RA related, also my dentist made me a night guard that fitted over top teeth to keep teeth from clenching at night. It works really well and in no time the pain went and not come back. Did your dentist not discuss this with you? X

[Newbie73 in reply to Pulfs]

thanks, I’ve it discussed this with my dentist but will do.

I go to the hygienist every 6/7 months as I’ve had periodontal disease in the past and again no issues/concerns noted. no evidence of night time teeth grinding or jaw clenching todate. I advised both the dentist and hygienist that i had been diagnosed with RA when I was last there as I have seen RA or the meds can cause gum issues. I’m due back with the hygienist 2 nov so will mention this then. Maybe before depending on what the consultant comes back with.

Thanks

[Hidden]

I’ve had that before when i hav been really stressed. Almost like lockjaw…. i focused on trying different things to relax and took some pain killers. It was a pain 🥴, but it did go eventually… Cold weather can make a difference too, so keep warm.

[Newbie73]

really helpful thanks

[BonnieG123]

hi, Newbie! I think anywhere there is a joint there’s possibility. Most people aren’t familiar enough with how serious RA is. They think arthritis is achy joints only. Best wishes.

[KaysDad]

Yes, as others have said, it certainly can happen. In fact it occurred before I knew that I had RA and I thought that I must have dislocated my jaw!! For me, it only affects one side or the other and the pain must be associated with inflammation because it seems to set my jaw slightly up on one side such that one side of my teeth meet as usual but not the other so there is an unusually high load on one or two pairs of opposing teeth.

[Newbie73 in reply to KaysDad]

thanks really helpful

[benmaise]

I had pain in my jaw with RA years ago. I'm in remission now.