GCA or PMR Flare?

[Shanahan1]

Hi all, I've had PMR for 18 months, now tapered to 5mg Prednisone daily. A few days ago out of the blue, severe stabbing pulsing pain in left jaw, left temple, and muscle in left upper arm. Lasted 20 minutes then another episode next day. Pain seems to originate in a tooth - I ate some chocolate and drank hot coffee and the pain cycle begins. But I don't think this is dental. No vision changes. Temporal artery biopsy in 2020 negative. Waiting for call back from doc now, but nurse said most likely doctor will recommend more steroids. Just needed to vent, this is such a complicated condition! Appreciate any feedback from those of you who have been in this situation. Thanks very much.

[PMRpro Ambassador]

Try chewing gum at one chew per second for 2 to 3 minutes. If jaw pain develops while you are chewing that them goes away when you stop chewing that is very suggestive of GCA - it is a screening test a group in Australia tested and found it worked well.

What you are describing isn't very typical of GCA - it sounds more like nerve pain, perhaps a trigeminal nerve problem?

[Shanahan1 in reply to PMRpro]

Will send hubby to the store for chewing gum, thanks for this great idea!

[piglette]

You will probably find it is nothing to do with PMR or GCA, I hope you find the cause though.

[Shanahan1 in reply to piglette]

We have so many overlapping symptoms, hopefully this can be sorted, trying to be patient!

[piglette in reply to Shanahan1]

Good luck finding what the problem is.

[SnazzyD]

Any sore bits if you prod in a line running along the muscle that forms the top of the webbing between your shoulder and neck? Another thing, but it doesn’t explain the arm, is steroid induced dentine hypersensitivity. I now have it and if I’m eating or drinking anything hot it sets off deep dental pain the lasts for a few minutes.

[Shanahan1 in reply to SnazzyD]

I'm going to try your suggestions, thanks so much!

[Smudge-1]

I first had severe pain above my tooth when chewing and it felt tiring to chew. I had no headaches nor temporal artery swelling so no biopsy was done. My first diagnosis was trigeminal neuralgia and visit to the dentist revealed no tooth problems. However my high blood inflammation levels (CRP and ESR) rang alarm bells. To cut a long story short 8mths later eventually I had a PET/CT scan which showed GCA/LVV.

[Rostom]

For years I would have 'dental' pain running along my bottom left jaw (often worse at night and came in episodes of several weeks then it would just dissipate) I would make an emergency appointment with my dentist who would religiously x-ray and prod, only to advise that he could find no problem with my teeth or gums. This experience would be repeated every three months or so (it became quite expensive!).

Eventually, I consulted Dr Google (or similar) and there was the perfect explanation, trigeminal neuralgia. I had actually had this diagnosis at the back of my mind but did not want to confront it (TN is known as 'the suicide disease'...) but eventually made my way to my GP who referred to to a neurologist.

An MRI scan confirmed that I have a blood vessel in close proximity to the trigeminal nerve and when laying in bed, the posture alone is enough to set it 'twanging' off. I had already worked out that the pain could be helped by turning onto my other side and by never ever putting my hand onto my cheek whilst sleeping (I learnt to put it under the pillow).

I have been prescribed a fairly low dose of amitriptyline which has done the trick and I now only have the slightest of occasional pain.

I have PMR and once thought I could have GCA. Not wanting to have further sight problems I went to A and E who explained that as the pain in my forehead was bilateral, it was very unlikely to be GCA, which is found on one side of the head only*. This may reassure you but you should obviously be checked out if you are concerned.

Hope that you feel better soon.

*Hope the doctor is correct on this but it is what I was told.

[PMRpro Ambassador in reply to Rostom]

"it was very unlikely to be GCA, which is found on one side of the head only"

There are doctors who think that but it isn't entirely true, the headache CAN be bilateral and although there is little proof that doing bilateral biopsies improves diagnosis they do still do them - so obviously expect there to be signs on both sides.

bpac.org.nz/bpj/2013/june/a...

says " It is commonly unilateral, with a constant pain that may be severe enough to disturb sleep.10 It is usually centred over the temporal or occipital area. Occasionally the pain will be bilateral and diffuse."

[Rostom in reply to PMRpro]

Yes, I wondered, too but as this was what I was told, I accepted it. I thought it may be a useful piece of information in the library of PMR facts here that help people to build up a picture of their problems.

GCA can obviously show either bilaterally or unilaterally.

I fully accept what you say as you seem more knowledgeable than many doctors!

[PMRpro Ambassador in reply to Rostom]

I think there are a lot of doctors who are stuck in the past and think both PMR and GCA are very different from what we see in the large numbers of patients who wander through our doors of the forum. Hearing stories from dozens of patients in one place means we are perhaps aware of things that aren't obvious when a doctor sees just a few patients a year - if that. And just because something is unusual or "rare" doesn't mean they don't happen - I could dine out well if I had a pound for every time a doctor has said "that doesn't happen in PMR" and we have half a dozen people on the forum where they have been through it.

Occasionally it is pure ignorance - "it's the wrong sort of headache" because it is occipital (at the back of the head) rather than temporal(across the forehead) and yet the textbooks will tell them that GCA favours the occipital part of the brain.