I was wondering if anyone suffers from RA in their ears/jaws? I have excruciating pain in my right ear. I have been to see GP and rheumatoid nurse and am no further forward. Tried antibiotic ear drops and change of medication to Benepali. I have appointment at dentist in 10 days to see if they can find anything as advised by rheumatoid nurse. Is there any advice that anyone can offer? I am taking cocodamol and naxproxen but these are not helping much. I am just getting severely constipated now on top of everything else!
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MaxineC
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Hi I had that last year. Went to ent and he cleaned out dry skin and put steroids in, it was a day procedure. I have probable sjogren's too. I went to A+E with the pain in ear and jaw, was sure it must have been infected or something. Any way it eventually settled with tramadol and the ent procedure. Had it about 3 weeks😵💫. Hope this helps. Take care
Oh thank you so much, this does help. Had it a few months ago but had to go on a course of steroids due to various infections therefore the pain disappeared for a while but since stopping the steroids, it came back with a vengeance! Hubby wanted to take me to a&e too as I was so dreadfully upset. So glad you are well now. I’ll make another appointment with GP and hopefully get to ent soon, thanks so much again xx
Yes. It was the thing that got my RA spotted. After seeing various ENT people it was decided it was TMJ. Temporomandibular joint disorder. It is. Do you get a click/dislocation sensation if you open your mouth wide?
Gives feeling of earache and some pulsatile tinnitus. Only effective treatment for me was Botox on a muscle in my face which connects to it. After a few rounds of that it is improved somewhat. Not available on NHS where I live….
Thank you very much for getting back to me. Glad you are feeling better. I have researched TMJ but do not have the clicking nor pulsatile tinnitus. This is just constant awful pain which is there all of the time. I will look into Botox after I visit my GP again!
Hi there , I occasionally suffer with jaw and ear pain , my dentist measured me for a gum shield to wear in bed and it works a treat so may be worth mentioning it to your dentist 😊
I get arthritis in my jaw and ear . Etoricoxib is helpful to me . But you need to rule out infections. If I have an infection it will make arthritis in that area worse. Hope you feel better soon.
I understand how you feel, its awful isn't it xWhen I was uncontrolled I would get arthritis in my TMJ joint which was made even worse by me clenching my teeth / griding in the night.
My medication (benepali) isn't now working qlot better and I've had a professional mouth gaurd made at the dentist and it really does work.
Over 20 years ago I had the most awful jaw pain and my dentist took out one of my back teeth as the pain seemed to radiate from this tooth. He then realised that it was related to my ra and refused to remove any more teeth thankfully. In reality he should not have removed that first tooth and I was still trying to control my ra and methotrexate which was causing havoc with my teeth!
My first major flare up 3 years ago included my jaw. It was agonising … I feel your pain🥰. Managed to get it under control with the right support/medication… don’t be reluctant to ask for help. On the plus size (that’s me 😆) I managed to lose 2 stone, because eating was so difficult. Hope you can get sorted soon xx
Thanks for getting back to me. Yes, it is a dreadful pain. Hopefully get it sorted out over the next few weeks. Glad you managed to lose some weight!! X
Yep! Also in my right side. The cartlidge at the front was also excruciating. It hasn't happened for a while now and I'm putting it down a quiet hydroxychloroquine success. Something, along with the Raynaud's which I recently realised has more or less stopped. Took a long time though.
Glad to hear you are feeling better now. I’ll just have to wait and see outcome after doctors and dentist appointment! Hopefully get to the bottom of it soon! X
I have ankylosing spondylitis, and have had issues with jaw for a long time. Like a few others I also had pulsatile tinnitus with it, as well as my tongue developing vascular lesion, being painful and twitching. I couldn’t chew food, so was relying on a soft diet. It also caused very tender spots on my scalp, especially above and behind the ear. At the time I was at a centre of excellence who referred me to an Oral medicine consultant. They are different to MaxFax, who focus on surgery. OM are trained as both Drs and dentists, so you generally have to travel to a large city to see one. He confirmed it was my AS causing it. I was taking Azathioprine at the time, so he increased the dose and it settled. Then a year or so later had to stop Aza, within a week or 2 all the symptoms returned, so I was switched to MTX, which I remain on to control it along with my many peripheral symptoms. I was given physio as well by one who specialised in the jaw which also helped. Hope you find answers soon. My jaw muscles have remained tender to touch since this initially happened in 2013, but I can live with that. 🤗
Oh my, what a journey you have been on. Really hope you manage to keep well. Yes, the frustrating part is waiting…hopefully I will have an answer soon.Take care x
Ye! Worse on one side than the other. I’ve always attributed it to Stills Disease and take codeine for it……… and then prunes 😉
My jaw has been effected by my RA. I can no longer bite my finger nails, it's like something has moved. My jaw flaires same as my wrists etc. It settles when the rest of me does.
For the pain killer constipation I can recommend Bio Kult which you can buy off Amazon. Check with your team obviously first. I was told personally that probotics are safe to take with the meds I'm on. A nurse actually told me they are better for you than than laxatives. But always check with your own team first.
Hi Largetv. I have a problem with my right ear that began in January this year and then my left ear last month. Having been on antibiotics, steroids etc. I was finally sent to ENT as an urgent case. It transpires that my immune system is attacking my inner ear and because I'm immunosuppressed I now need ongoing support from ENT. The pain radiates to my jaw and it can be difficult to chew. I have both Psoriatic and Rheumatoid Arthritis. When I have had treatment, the pain in my jaw disappears? This might not be the case for you but I would hope that you can see someone in ENT quickly to rule out a problem with your ears. Good luck and I hope you feel better soon.
Hi, this sounds like exactly what I am suffering from. Tried antibiotics and steroids and nothing is clearing it. Pain is excruciating. Hoping to get refer to ENT also. Thanks so much for this information. I really hope you keep well x
Yes!!! Lots of posts on here about this! I developed Tinnitus a few years ago which coincided with jaw/ear pain. Nothing found at the dentist etc, after seeing someone from ENT it was found to be coming from my TMJ joint. My Tinnitus is worse when my neck/jaw is stiff and sore! When it first happens, you think it's tooth ache etc.
In the 1970’s when my RA first developed my jaw was badly affected. I had various treatments, a steroid injection into the jaw, and my jaws were wired shut for 6 weeks. (I went on a liquid only diet and lost lots of weight). It didn’t really help the jaw pain but in time it just got better of its own accord.
It talks about how the jaw (and sometimes the ear by extension) can be affected by RA.
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Wow, thank you for that link. I have AOSD diagnosis at 17 now 60 and I’ve alway thought it was the Stills Disease but the surgery nurse always gives antibiotics via GP which make zero difference.
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