GCA or Occipital Neauralgia

[Qscrabble8]

confused. I’ve seen a rheumatologist three times in the last year Re:Temporal Arteritis .

I’ve had a biopsy which came back negative, because previously my doctor prescribed steroids for inflammation and head pain.

Rheumatologist prescribed 50mg of prednisone after a while to be gradually reduced. I’m now on 6mg and not feeling to good. had a blood test a few weeks ago and my blood markers were good. My rheumatologist referred me to a neurologist because he thought I may have occipital neauralgia. Which I’ve been offered a nerve blocker injection.

But I’ve developed a painful jaw, which I’m not sure is one of the symptoms of occipital neuralgia. This is where the confusion comes in.

[SnazzyD]

Hello, did 50mg help at all and if so, when did the symptoms come back? Do you feel ill all the time and if so what with exactly?

[Qscrabble8 in reply to SnazzyD]

His 50mg did help, I’ve been slowly reducing the dose by 1mg a month, I’m down to 6mg and the symptoms have returned ie: temperature, face pain and jaw pain when chewing and opening my mouth. Feel very tired and hot.

[SnazzyD in reply to Qscrabble8]

1mg per month since 50mg or just recently? Looks like you’ve only been on Pred for about 6 months looking at your posts.

Your symptoms may be from other infections in the head but that needs a medical opinion. How high is the fever? The chewing problem with GCA usually comes with chewing and goes with stopping chewing. The symptoms sound like you need to need to get swift medical opinion. The negative tests shouldn’t overrule GCA symptoms. Doesn’t sound exactly like occipital neuralgia from the little you’ve said and it may be something other than that or GCA. If you felt much better on a higher doses of Pred suggests inflammation is being caused by something. Why did the Rheumy pass you on?

[Qscrabble8 in reply to SnazzyD]

He passed me on because my blood markers were ok. I’ve requested another blood test as the last one was a few week’s ago and have felt much worse this week, waiting for a reply.

[SnazzyD in reply to Qscrabble8]

I, like some didn’t have raised blood markers. I would be asking the neurologist exactly what makes them think it is specifically occipital neuralgia as opposed to anything else. How would they explain ALL of your symptoms, not just the ones that fit their view?

[grannynormacath in reply to Qscrabble8]

surely 50mg to 6 at a reduction of 1mg a month would take 44 months at least !!

[DorsetLady PMRGCAuk volunteer]

Can you explain a bit more about your jaw pain - and maybe try the test suggested in the link -

sydney.edu.au/news-opinion/...

As for your blood tests, they can take some time to show if the inflammation has built up again…

[Qscrabble8 in reply to DorsetLady]

Jaw painful when chewing and opening my mouth. I know it seems hit and miss with blood tests. I had a biopsy which was negative because my GP prescribed the steroids a few weeks prior.

[DorsetLady PMRGCAuk volunteer in reply to Qscrabble8]

Think that needs following up and reported to your Rheumy…as PMRpro says it’s a red flag…and please don’t be fobbed off by the negative biopsy of GCA.

[Qscrabble8 in reply to DorsetLady]

Thank you.

[PMRpro Ambassador]

What sort of painful jaw? There are several causes of jaw pain and the jaw pain associated with GCA is mostly claudication - which can be elicited with the test described in the link DL quotes.

[Qscrabble8 in reply to PMRpro]

Jaw pain eating and opening my mouth.

[PMRpro Ambassador in reply to Qscrabble8]

A cramping pain that starts shortly after starting to eat and stops when you stop eating?

That would normally be a red flag - despite the negative biopsy.

[Miacaro45]

I have had TMJ most of my life and by getting a good night guard I never had a problem. Four years ago, I kept complaining to my dentist that my jaw hurt me and he made me a new night guard. Didn’t help. Went to different dental specialists and had 2 more night guards made. Finally, one of them said that he wasn’t sure what was wrong with me. By then, the awful headache started. Finally, my primary took blood tests and found the answer. To make sure, I had a temporal artery biopsy. All this took almost 6 months! I wish you only the best. You found a great group here to help you.

[Poetryb]

Hello as you know GCA is potentially very dangerous. Claudication means you will be unable to open your mouth to eat properly. Also a raised temporal artery, I could see mine was raised and that is another sign. You need to get to hospital if that happens,

[PMRpro Ambassador in reply to Poetryb]

"Claudication means you will be unable to open your mouth to eat properly"

Not sure that is true - claudication stops you chewing for long but you can usually open your mouth before you start to chew

[DorsetLady PMRGCAuk volunteer in reply to Poetryb]

PMRpro is correct on jaw claudication- been there!

[Bluey-1 in reply to DorsetLady]

So have I! Very unpleasant and in retrospect was scary. I didn’t know t the time how ill I was.