After 6 years of PMR has GCA now started?

[keeptalking]

After 6 years of a PMR journey with two great pauses. One of 10 months and the other only 2 months before the possibility of GCA.

I would be pleased to hear your comments about whether it is or not.

All classic symptoms like bad constant headaches, tender head, stiff painful neck, blurry eyes. No jaw problem though.

Placed on 40mgs. of Pred. despite my protest that it might affect my ultra sound result. 2 days later, after 80mgs. Pred. My scan showed nothing!

Symptoms have been helped considerably by Pred. but back by 4am so not lasting for 24hrs.

Seeing consultant on Thursday so would be grateful if any thoughts you may have before I go.

Thanks

[DorsetLady PMRGCAuk volunteer]

Placed on 40mgs. of Pred. despite my protest that it might affect my ultra sound result. 2 days later, after 80mgs. Pred. My scan showed nothing!

Just because it showed nothing, doesn't mean you don't have GCA.. which is why we always say symptom, symptoms, symptoms... which you say have been helped by Pred. But if 40mg isn't lasting 24 hours then there is something amiss.

Plus the 'possibility' of GCA should always be treated as you were - better an inconclusive ultrasound than sight loss.

You need to tell consultant what you've told us about the 40mg... and see what they say about the way ahead. Please keep us informed.

[keeptalking in reply to DorsetLady]

I have been going by the symptoms even without the jaw. Hope my consultation does.

[DorsetLady PMRGCAuk volunteer in reply to keeptalking]

Yes, so do I. That’s who I meant, not you… 🤦🏻‍♀️.

Not everyone has all the symptoms-but enough to make it a possibility.

[PMRpro Ambassador]

It is difficult to say - you can have GCA without the ultrasound scan (or a biopsy) showing anything and symptoms always trump results.

Have you had an eye examination? Your local CUES service can examine the back of your eye to see if there is any sign of poor blood flow to the optic nerve.

primaryeyecare.co.uk/servic...

Is the stiff neck affecting your sternocleidomastoid muscle?

kenhub.com/en/library/anato...

If that is tight it can mimic the head pain of GCA.

To be fair though - if more pred has helped considerably it does suggest it is due to inflammation and it is still early days. The antiinflammatory effect of pred lasts 12-36 hours - and 4am is when the inflammatory substances are shed in the body every morning so understandable that you are getting pain then until you take the next dose.

On balance, insofaras you can tell from a description - putting you on a high dose of pred was perfectly justified and the right thing to do.

Do let us know what the rheumy thinks.

[keeptalking]

Eyes are okay according to the eye test. Am going to my optician to check my glasses to be sure but can’t imagine that would affect my neck and top of head.

My ESR is 30 and CRP is 12 and has never moved from 5 before so some inflammation is going on.

Thanks for your help

[Alliswellforever]

could it be just cervical arthritis or stenosis? I have both and have tender scalp and top of head pain and tightness.

[keeptalking in reply to Alliswellforever]

Not the steroids causing it as the headaches started 4 weeks before I started on them Did you mean cervical or Vera me arthritis? Haven’t heard of either but worth thinking about Thanks