arthritis in the jaw

[Ashley1014]

Well I've been back on my meds for 6 weeks now. I'm doing really well on methotrexate and enbrel as well as flexeril for breakthrough pain. I have some pain that I know meds just won't help and that's ok. But overall I like to think I'm doing well. Anyways I found out today that while I was off the meds my AS and RA were progressing and have moved into my jaw. Especially on the right side. I'm only 34 and already have severe si joint damage as well as my tailbone and bottom 3 vertebrae fused and quite a few degenerative disks in my back as well as arthritis throughout most of my body. But my jaw?! Come on now. It's like a sucker punch. does anyone else have it in the jaw?

[Madmusiclover]

Sadly yes.

[Ashley1014 in reply to Madmusiclover]

How do you manage it?

[Madmusiclover in reply to Ashley1014]

Talk to your dentist and your gp. I was referred to maxillofacial. Look up Temporomandibular joint dysfunction. It might be that. Needs investigating.

[Ashley1014 in reply to Madmusiclover]

I’ve been to the dentist. Tried the mouth guard route the last year. When it didn’t give any relief they recommended I speak with my rheumatologist. Had an appointment with her today and she said unfortunately it seems most likely the arthritis is in my jaw.

[Madmusiclover]

my gp referted me to maxillofacial. Had Botox injections: awaiting acupuncture and pain management have me on a list for a neck block, there are things out there to help. Prior to this had mri to confirm. I’d go back to my gp if I were you.

[Runrig01]

Yes, I have AS, and went 25Yrs before diagnosed. By that time my SI joints had fused, as well as my Ribs, I have no chest expansion and lung complications from that. I also have 3 slipped discs, 2 in my lumbar spine, and 1 in my neck that has calcified, and presses on the outer layer of the spinal cord. I was diagnosed by a Nass medical advisor, who said I had an aggressive form. I started getting jaw pain a number of years ago, I also had vascular lesions on my tongue, tender cheeks that cramped, as well as pulsatile tinnitus, tender scalp and sinus pain. I was referred by a rheumatologist I was seeing in Leeds, I live in Kent, long story. She was concerned and referred me to an Oral medicine professor, as opposed to Maxfax, who are only really interested in surgery. He confirmed it was all due to my inflammatory arthritis affecting my jaw, and the inflammation was seeping out to nearby structures. He increased my methotrexate, and referred me to a physio who specialised in jaw problems. She taught me how to massage the area, and gave me exercises for the jaw. Thankfully mtx has settled the worst of it, although my cheeks are still tender to touch, and certain foods bring on the cramps. I seen ENT who confirmed chronic inflammation, probably from the jaw, and put me on long term nasal steroids. You tend to have to travel to large cities to see an Oral medicine specialist, they are trained as both dentists and Drs. On top of all that both knees and 6 toes are all subluxed, from the tendons stiffening. I had surgery to reconstruct some of the tendons, but need more surgery next month. It’s a disease that keeps on giving. I’m on benepali, and 25mg MTX, as well as steroids. Hope you manage to get support, as the pain can be horrendous at times. Sorry for the lengthy response 🤗

[wilbertjellyfish in reply to Runrig01]

Can I ask about your tender scalp? I get occasionally weird lumps on my scalp like you've bumped your head and really sore to touch but no one is able to explain. My scalp is actually sore like if I laugh I have to hold my head. !!

[Runrig01 in reply to wilbertjellyfish]

I didn’t gave any lumps or bumps, just very tender to touch. I had previously had GCA, and had excruciating pain in my scalp then. This wasn’t at that severity, Barry did say, it may have been a weak spot for inflammation to return. I avoided touching my head, and dreaded brushing my hair. I do still have small area of tenderness just above and behind both ears.

[wilbertjellyfish in reply to Runrig01]

Thanks for the reply. My symptoms are weird. Currently my scalp is ok so 🤞

[IlovePorridge in reply to wilbertjellyfish]

That's exactly how my head feels. So Itchy and painful. GP seems at a loss to know whst to do as steroid mousse didn't really help. Rheumatologist just made a note of symptoms, and then moved on. I'm going to consult pharmacist to see if there's anything he suggests.

[Ashley1014 in reply to Runrig01]

I’m all for a lengthy reply! Thank you! We learn so much from hearing each others experiences and symptoms.

[Kati66]

Hi Ashley,

It sounds like Temporomandibular Joint Disorder, yes that is another word hard to say! I have this in both sides but the right is worse. My dentist picked this up and referred me to the Maxillo facial consultant, who is lovely and she now gives me Botox in both sides. This works really well and helps reduce the pain and swelling. The Botox wears off after about five months so have to get another lot done. I look less like a hamster when the Botox is working!!

Sorry to hear you are having so much trouble with your joints and AS 😔😔

Kati x

[Sarahg62]

morning Ashley. I have the same as you, diagnosed with RA 44 years ago, but only just been diagnosed with AS. I am 62. Also have it in the jaw, which for some reason people find it hilarious. Trust me it isn’t. I saw a consultant a few months ago the ago who was very helpful. Not allowed to yawn, chew tough items etc. have been waiting a year to see orthopaedics about my SI joints as that is horribly painful. It’s not fun, but there is help out there. Stay strong xx

[Ashley1014 in reply to Sarahg62]

The si joints are the worst! I’m so sorry yours are affected. I’ve found that a foam roller and a heating pad really help the si

[Sarahg62 in reply to Ashley1014]

I also have a massager - gets right into sore muscles around the joints.

[Otto11]

I have it in both sides but worse at the right. I found out as one day I woke & couldn’t open my mouth. It was dreadful. I went to a local clinic who just said to drink through a straw. It took 4 days to settle. That was a long time ago & touch wood it never been back. I struggle keeping my mouth open at the dentist but that’s my only issue these days.

[Salamanca21]

Oh yes often get that. You get used to it!

[MJSlide1958]

Hi Ashley1014,

My daughter has had RA since 17 and is now 32. Been on Enbrel since 2010 and worked fine, was in remission. And then after 8 years Enbrel was failing her somewhat. Rheumy introduced slowly Methotrexate tablets. It took her a few months to get to the correct dose, which was 15mg Methotrexate weekly and Enbrel then ticked back in. She is on weekly Enbrel injections and weekly 15mg MTX tablets. 5mg folic acid tablets 6 days a week apart from the day of MTX. She goes to work full time and is managing. Sometimes she takes paracetamol. But weather and stress brings pain back, she has a demanding job unfortunately. She would like to have a baby in the near future. I think it is a good idea for you to keep on with meds and blood checks, it might just kick in. Too cold and too hot temperatures could set some people off, especially when going abroad for some patients though. Listen to your body and your Rheumy. Good luck

[Ashley1014 in reply to MJSlide1958]

The cold is definitely a factor! We’ve been in single digits here lately and I’ve had that lovely bone deep ache all over that nothing really helps.

[MJSlide1958]

Yes, I am sure most are feeling it.

[Suziepmama]

I have had terrible pain in my jaws with RA but I was on high does methotrexate. When cut down on dose jaw got better. Went back up on methotrexate dose again. Pain came back. I cannot take the higher doses over 7 tabs

[Ashley1014 in reply to Suziepmama]

Hmm I’m on 25mg methotrexate

[Suziepmama in reply to Ashley1014]

I've been on that dose and jaws killed me. Couldn't hardly eat it hurt so bad. But when lowered dose because it was helping noticed pain went away also. Hope this may help you

[Ashley1014 in reply to Suziepmama]

Thank you for your help! I will have to speak to my rheumatologist. The mtx gives me sores in my mouth and nausea but I can handle that. But if it is also giving me pain I’d like to try lowering the dose to see if it changes. Couldn’t hurt to try.

[Suziepmama in reply to Ashley1014]

I also had mouth sores always in same spot. That also stopped on the lower dose. They want me on injections so I can do higher dose but very hard to get the meds from pharmacy. So stuck on tabs. Dr. says shots do not have all the side effects as tabs. Hope this has been some help to you. I would at least ask your Dr.. I also take 2 folic acid a day for nausea, really helps me. Have a blessed day.

[Neonkittie17]

I always have had it on and off from early stages of RA. It’s been intermittent depending on if the meds were controlling RA well enough. The dentist helped me a lot with recommendations and exercises. So did the physio. Try ask your rheumy to see the hospital rheumy physio re jaw exercises and physio. Hope they can help. I didn’t need to go down the Botox route as it was well before Botox became popular in this kind of use. Do persist with asking your medical team though for some help with this. It’s still quite early days for your meds, so hopefully your jaw improves as your new meds work more for you. Was that way for me. It’s all fairly decent atm. 🙏

[Jfw24]

I’ve had it in my jaw from day one, it’s more or less under control now with my medication but I had an awful time with it in the beginning.

[WilfDog]

I would recommend jaw exercises. I was given them some time back. I'm on enbrel and steroids. I have been on most of the DMARDS but due to contracting neutropenia I had to stop methotrexate. I have sJIA from age five OA and diagnosed with AS in 2021.I had jaw pain for some time, but the exercises helped massively as did having acupuncture. I now take doterra life long vitality supplements since 2017 alongside my prescription meds.

I hope you find something that works for you.. xx

[ChillySwimmer]

Yes, TMJ pain. I get it on both sides, one side usually worse than the other, and then they swap over just for a change. My consultant poo-pooed it, but one of the rheumatology nurses told me (at a separate appointment) it's often a sign that the disease is active.

[Ashley1014 in reply to ChillySwimmer]

Funny enough right after I posted about the jaw pain I went into a horrible flare. Of course the day after I saw my rheumatologist. Why does it always happen when we aren’t seeing the doctor? I haven’t had a flare this bad in a very very long time. I’m surprised by the intensity when I’ve been doing so well on my meds.

[ChillySwimmer in reply to Ashley1014]

Sod's law, isn't it. I hope your flare eases off very soon.

[Ashley1014 in reply to ChillySwimmer]

It is quite funny how that always seems to happen. Thank you