A year ago I had a pain in both ears and my throat which kept me awake. GP looked in my ears and throat and said "can't see anything", so that was it until early summer with me being very hoarse and felt it was hard to swallow. Saw a different GP who sent me to an ENT specialist, followed by an ultrasound. There was nothing to show. However, it's got worse now. I started Leflunomide end November last year but felt generally awful on it so stopped three weeks ago. I did have a massive flare up afterwards (but my grandson was born then and it was a bit stressful for a few days)
My question is, did/do any of you have anything like this? I'm guessing it's TMJ but I don't know. It's not there all the time, just happens. At the moment, I have the pain on the right side, of head and now my left knee has decided to play up. Fed up with it!
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priss58
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Sounds like you need to try a different dmard, the leflunomide must have been doing something for your RA even though it made you feel unwell. I get jaw pain and stiffness from grinding my teeth at night. I wear a mouth guard and that’s helped a lot.
I have AS, and get a lot of similar symptoms. I would get jaw cramping, vascular lesions on my tongue as well as tongue spasms, burning temples, tender scalp and pulsatile tinnitus. It was agonising, I was already being treated for polymyalgia and they suspected GCA. It settled with steroids and a dmard. When it returned several year later, I seen an Oral Medicine Consultant, who said it wasn’t GCA returning, but was due to the inflammation from my AS. They increased my MTX and the pain quickly subsided. My jaws are always tender to touch, as is my scalp, just above and behind ears. Hope you find answers soon. 🤗
I have often been told that it is due to grinding my teeth - but the dentist says I don't and agrees with me that it's part of my Rheumatoid Arthritis. They are tender right now as are my hand joints - I love to see the frosty weather and the sun shining on it, but it doesn't suit my joints at all!
It sounds as if your disease is still a bit too active - contact your rheumy team and tell them so! You need better control of the inflammation - whatever the blood tests show, your symptoms are saying your joints are inflammed.
Hi, oldtimer, thanks for your reply. You're right about the lovely clear frosty mornings! My fingers, wrists and toes don't like it at all! Plus I've shocking pains in my ribs and arms at times too. I do grind my teeth though. The dentist is always on at me, at my next appointment I might ask about the mouthguard, but I haven't noticed waking up with clenched jaw recently. Last night I took some ibuprofen and slept OK but I don't want to be taking them all the time. I also have two discs in my neck knocking together. You're right though, time to get in touch with the rheumies. Perhaps he'll put me back on RTX.
Me too. I've had all the dmards in previous years. The only thing that really worked for me was Rituximab. Hope you get something that helps. Good luck to you too
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