…a possibility, and if so then it needs to be checked out, so to that end you are not making a fuss about nothing.
Are you sure jaw and neck pain is not TMJ?
Have you tried ordinary painkillers to see if they make any difference? If so, then unlikely (but not impossible) to be GCA, if they don’t help, then could be GCA.
Maybe try the chewing gum test - the following give differing times to actually chew- but 2 minutes should be sufficient -
Thanks Dorset Lady. I have just read the two links on the chewing gum test- im off to the shop to get some chewing gum and i will give it a try. My gut feeling is that it tmj- i was just a little worried to have the jaw symptoms along with the eye sensitivity and kind of pulling sensation when i move my eyes. Never experienced it before.
I have just reduced from 8 1/2 to 8 mgs around the time this started , so not sure if thats a factor? 🤷
I reduced by slow tapering initially alternating 8 1/2 and 8 for 6 weeks and now on just 8 this last week.I was ok when alternating, could be coincidence.
I had my eyes routinely checked about 6 months ago and all was on then. My eyes seem a little more blurry when reading than normal - but could be in my mind!!!
With absence of severe headache i probably think its not GCA , but i think its in the back of most of our minds when getting weird symptoms.
I think i will give it a couple of more days and see how i get on.
Difficult to say really never having had it myself. GCA pain tends to start when you are using the jaw, chewing or talking, but stops when you stop the action. It is usually a sort of tired, cramping feeling - claudication pain is so-called because claudication means limping when it happens in legs, tired, lack of oxygen aching.
Normal pain killers arent taking the tightness and temple tight feeling away fully but im going to just see how i go for a few daysI have a dentist appt next monday so i will mention it to him and if any symptoms get worse i will contact my rheumy. X
I had what private rheumatologist described as extreme jaw claudification. My jaw was sore all the time, varying degrees of pain, as well as teeth and cheek bones before severe headaches started and GCA diagnosed. I would get it looked at as symptoms do tend to vary.
Sorry Lindalou62, but I would not be waiting at all. Either ring your Rheumy or head off to A&E. I don't take chances with GCA. We all know people who have lost total or partial vision because of delay. If does not matter at all if you do discover it is not GCA.
A couple , but I know someone who delayed and then went and it was too late, lost sight in one eye, and in hospital on 100mg for nearly 3 days. It was so sad.
Hi, I was diagnosed with GCA in 2020 but I only had fleeting temporal pain and slight jaw ache. I did have a very tender scalp as well. I had a halo scan and temporal biopsy. The jaw got quite a lot worse before gradually getting better on 60mg of Pred. I couldn't open my mouth very wide (eating a sandwich was difficult!) and would wake up with severe ache. However it did get better and now I just get small sensations sometimes but nothing that I'd call pain. I've had one or 2 flares of PMR and now I'm on 3.5mg. Do get it checked out as if it is GCA the sooner the treatment starts the better. Hope this helps.
My experience was that my scalp felt like it had sunburn especially when combing my hair but I had recently finished Radio/Chemo therapy so put it down to some bizarre anomaly associated with that, I had never heard of GCA. I didn't get headaches but more a sense of "pressure", no jaw ache but then my vision in the Right eye started to cloud in on the periphery, a sort of light lavender colour. I went to A+E by ambulance and they kept asking me about headaches, always headaches, no. There was a government drive on to tackle strokes and this is where target setting distracts away from thinking broadly. Despite them thinking I was having a stroke I was sat there for nine hours with my sight deteriorating and by the time I was seen by an Ophthalmologist (9:00 am, I arrived at 1:00 am) it was so occluded the eye was gone, still they didn't know and he went off for advice. I was finally started on a steroid drip 24 hours after arrival, toooo late. They continued to cling on to a non GCA diagnosis for two years after because of "No headaches" until I talked through it with a Rheumatologist and related my extensive family history of crippling Rheumatic history on my Fathers side and was diagnosed with GCA. Never take chances with this and don't listen to them either.
There are far too many pre-conceptions about both PMR and GCA. It probably isn't very concerning with PMR, just results in poor management, but with GCA it is another matter altogether since permanent loss of vision is always on the cards.
Agree completely, the consequences are dramatic and life changing and all it took was a little thinking, get stuck on the Prednisolone drip as an early precaution and maybe the sight in my Right eye could have been saved, it has left me with some bitterness I try to quell as I have enough to deal with already.
There is no point in being bitter -it’s gets you nowhere -just makes and others around you miserable.
But, believe me, I do know exactly where you are coming from.
I have found 10years on, being mono - sighted really doesn’t impact my life that much…apart from minor niggles at times. I’m still me - and enjoying life to the best of my ability…
could be much worse, I know another day or two and I could be totally blind.
My GCA headache was quite light for several days before taking off. And I have had a lot of tingling and tightness in the eye and cheek area, which is now improving. I hope you got an answer today, or at least some prophylactic treatment: it's not nice wondering all the time.
Good luck with that and please push everyone you can think of. I never experienced the terrible headaches that are associated with GCA and I was stupid enough to mention to a foreign Rhumy that originally I was blaming my eyes on needing new glasses and my jaw on problems with a bridge I had done a few weeks ago. So on my notes it says severe headaches and the lady admits her jaw and eye problems are down to other things. This was 6 weeks after my big panic luckily my dr was on the ball for once, and put me on 40 mgs of steroids immediately once the receptionist condescended to give me an appointment and had my blood taken which showed elevated inflammation and then him telling me i might go blind if I didn't take the steroids immediately. Numb feeling on scalp, severe calaudication of jaw only when chewing, probably the most painful thing was my tongue which kept going numb with a white tip. The tongue muscles pain was horrendous and the muscles up the right side of my neck. Plus the blood inflammation. The cheek pain and the very unusual eye feeling plus seeing crystals around my left eye and the all over muscle pain was the beginning. So not everyone has the severe headaches.As they say on this site we are all different, no set path. My jaw let me lose half a stone, and piles are a thing of the past. Good bit! Jaw only tired sometimes chewing these days 18 months in.
Hope the doctor called the receptionist in for an education moment!
Happened to me once with my younger daughter - our GP was away and the locum was totally dismissive of my daughter who was blue around the lips and really struggling to breathe. So I called at a local paediatrician for advice. The nurse/receptionist sent me away to come back in half an hour when the doctor would be finished with the current patient. The doctor took one look and shot for the drug cabinet and a steroid jab. Then she called all the staff in and said if a patient appeared in that sort of state - they were never to wait but to fetch her immediately!
That's part of the reason I REALLY object to receptionists being the gatekeeper ...
Thank you and I must apologise for the mix up over the grading of my hospital treatment. you are so on the ball, it does start from 1 for excellent. It was probably Costa Coffee or somewhere which starts with 1 and works up to 10 for excellent . Still waiting for my long awaited bone scan results. I think the asking if having to wait another 4-6 weeks before i could "Reschedule" my appointment was my punishment for not attending an appointment I didn't receive. And being classed as "no show" all of a sudden they admitted in November letters did go amiss--- funny no reminder on my mobile if they sent me an appointment. I am so tired of it all. Maybe i f we don't get Monkey Pox it will all work out.
I had severe jaw pain but no eye symptoms. I couldn't open my mouth very far and chewing was excruciating. I went on a very soft/liquid diet. All the doctors and my dentist said it was TMJ. I bought an oral appliance and slept in it but no help at all. In the end they decided it was trigeminal neuralgia and it subsided on its own after a few weeks and has thankfully never returned. Just a possibility to consider. Sometimes more than one thing at a time muddy the picture of what is really causing pain. I hope it is better for you now.
I can really relate to the symptoms you are describing as I have just today come home from the local ED with a diagnosis of GCA.
My symptoms started off as a PMR flare (at 7mg pred and foolishly overdid things for two days) but then rapidly escalated over about 10 days to more severe symptoms, especially on the RHS – bad headache, (a feeling like someone was trying to jam a bolt through from one temple to the other), prominent and sore temple veins, scalp soreness, jaw pain, especially when trying to open my mouth and while eating, tightness and tingling up the side of my face from jaw to temple, pain in my ear and dramatically increased tinnitus. A very stiff, tight neck.
However my eye symptoms weren't very marked, just some focussing problems if I didn't concentrate, a feeling of tightness and heaviness in my eye and somewhat reduced range of movement of the eyeball that was uncomfortable rather than painful. A few flashing lights , but that was about it for the eyes.
Brain fog and fatigue like I had an elephant sitting on me…
I'm now on IV methylprednisone at 1gm each time for 3 days as an outpatient (currently no beds to be had any any hospital in my part of Australia at present – they're totally bedlocked) and then will be on 50mg daily oral prednisolone until I can see a rheumie, hopefully within 4 weeks.
So even if your symptoms seem weird or unusual, from my experience, please get them checked out as a matter of urgency. I very much hope they're nothing to worry about, but like me, it's good to be reassured one way or another and either relax or get appropriate treatment. Good luck!
And, while you are on Prednisolone if you have anything unusual get advice and take it further if necessary. My husband was tired, weak, weight loss and told it was all down to steroids. He had in fact got a lung infection only 2 months in. It didn't have a good outcome . . . .
I'm very sorry to hear about your husband. Thank you very much for your kind advice. Yes, I'm very mindful now that I've virtually no resistance to infection at these high doses of pred. Not good when Covid and a very nasty flu are rampant around here. And it's only just the beginning of winter for us…
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