Hi all - I am going down in prednisolon to get more symptoms, so that the doctors can find the correct diagnosis. Looong story. I now have jaw pains - quite severe, but lasts only a few minuts each time. The dentist says it is not the teeths. How does it feel if you have GCA, I mean the jaw pain part of the symptoms?
Thanks 
Usually it is cramping type pain that starts when chewing (or even talking sometimes) and lasts as long as the action continues but stops fairly quickly when you stop only to return when you resume the action.
An Australian group suggests chewing gum at one chew per second for 2 to 3 minutes - pain as a result should be considered as due to GCA until proven otherwise.
My jaw pain was only when my jaw muscle was being asked to work, as in chewing. The muscle was being starved of oxygen so working made it hurt like one’s legs with too much exercise. If I stopped it went, though I was treated very soon after that symptom developed, so I don’t know how it would have progressed. However, once I started Pred in March 2017 I’ve had global teeth pain at times where it is mind numbingly painful for a couple of minutes after eating or drinking hot things. It has reduced with dose of Pred but the tendency is still there with a hot cup of tea. After three months on Pred and my muscles were affected I got trouble with a muscle called the sternocleidomastoid which mimicked head symptoms of GCA including jaw pain. If a Bowen treatment fixed it, it knew it wasn’t GCA. As my muscles got better it became less frequent and now only appears in certain circumstances.
For me it is like you describe after eating (not every time) but not really related to muscle movement. The pain i sharp and teeth are watering. It has not been there before. I had reduced from 15 mg to 12.5 when it started. Is that what you write, that it came during reduction of pred. that the numbingly painful symptom began? Sorry for my english
I think it happened any time but most of any of my discomforts generally were worse just after reduction. Another problem that can occur is temporomandibular joint dysfunction where the muscles in the joint don’t work properly. This is a different cause to GCA and I also had that while my muscles were weak.
Is your pain in one place in the jaw or all over?
My jaw felt locked. I could barely move it.
I also had the feeling that my jaw was locked. I found I couldn't open my mouth wide enough to use my electric toothbrush, not even able to eat a very small banana unless I used a knife and fork. Eating anything hard was painful and a tremendous effort, my early morning digestive biscuit with my first cup of tea wasn't possible 😞. I had root canal treatment and a bridge fitted a few months earlier and thought that may have caused the pain. My doctor said it was muscles and the physiotherapist said it was TMJ pain, but I didn't have any jaw clicking or toothache like pain usual with TMJ. But then again they told me for 6 months or more that I had a trapped nerve!!!
My Initial symptom of GCA was pain in upper and lower Lhs jaw and teeth, which then spread to both sides and ears. This was a continuous pain, which changed to a severe headache six days later. I had no pain on eating, but did find it difficult to open my jaw fully with pain on the lhs.
My teeth have become horribly sensitive and my mouth can flood with a metallic tasting liquid. This is either spontaneous or triggered by some foods. Not sure if it related to Prednisalone, Tocilizumab or GCA itself, my jaw is fine when I eat.
It isn't reflux is it SJ?
yes this sounds like what I have! is it only after you started medication? Are you sure you have GCA - I mean here in DK you need the positive biopsy before the doctors will give the diagnosis
Mine was on both sides & hurt when I ate, so much so that I couldn’t eat before lunchtime. It did seem to improve later in the day. I went to the dr to get antibiotics as thought it was a sinus infection.
My jaw was uncomfortable when I opened my mouth wide and on eating, particularly if I had bitten down something hard like a nut. Both top sides of my head was tender to touch too. I'm dreading it coming back as I reduce, as GCA scares me so much due to possible sight loss. I think we all try and blame it on other things like TMJ which I've experienced and that's far worse than the pain with GCA. I've had a tender head on high dose Pred and still lower, so not sure what's going on. Just wish doctors and Rheuys were more experienced with GCA.
here is my thought and experience: jaw became so sore when eating, that I resorted to soft foods only but I kept losing weight. I did have PMR the year prior, so my doctor should have clued in. Eventually, my vision started doing strange things & one morning woke up with double vision in Rt eye. Two days later woke up blind in that eye. (optometrist didn't get it) So don't wait too long if you think it is GCA. Need high doses of prednisone quickly to stop any advancement. This was a quick telling of the tale, but the blindness is permanent. Good Luck.
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