Is it GCA? Best next step?

[MrsPMR]

Hi fabulous community - Mr PMR diagnosed with PMR about a month ago. Symptoms severe and included weight loss. Started 20mg of Pred 3 weeks ago. Spectacular response and almost 100% reduction in pain and stiffness for 24 hours a day. We’ve been watching carefully for GCA on the advice of the forum and based on the severity of initial symptoms. The last couple of days, bit of non-specific dull headache (thought dehydration but is drinking plenty), now describes very occasional pin point ache at right temple. It’s all sounding like GCA to me…any thoughts? Also given it’s Sunday morning would you aim for an emergency GP appointment tomorrow or phone 111? Any experience of how to get some useful advice from NHS appreciated. Don’t want to overreact or ignore!!!

[SnazzyD]

I would call 111 on the basis that he has a history of PMR which increases the likelihood. It is great that he responded well to 20mg which further helps the diagnosis of PMR amidst no definitive tests. If it is GCA, 20mg or less is too low which is why symptoms can break through because the starting dose for that is 40mg. It could be something benign but it would be best for someone qualified to have a look. They might just say increase to 40mg or so and see your GP next week. If he does have GCA in the mix, much more Pred is what he needs above all else.

[MrsPMR in reply to SnazzyD]

Thanks SnazzyD - we’re grateful for your response and will keep you posted.

[DorsetLady PMRGCAuk volunteer]

Hi

Dull headache doesn’t really sound very GCA ish -but people with PMR do get those as well.

Is there scalp tenderness? Does temporal artery look more pronounced (not that that’s always applicable)? Location of headache? All over or more localised- like just above nape of neck or over top of head?

As he felt good , has he done more that could have triggered a flare or just caused a strange headache.

I’d address all of those and then call nhs111 -it’s some of the questions they may ask.. it may also put your mind at rest.

Please keep us updated. Fingers crossed

[MrsPMR in reply to DorsetLady]

Hi DL - no scalp tenderness, jaw claudication, no pronounced artery, difficult to locate where the headache is…not sharp pain or anything like that, has felt good and has been to work 3 half days this week. We’ll do some watchful waiting and see. If in doubt we’ll phone 111. Thank you so much for the support.

[MrsPMR in reply to MrsPMR]

To be clear NO jaw claudication!

[SnazzyD in reply to MrsPMR]

You say there is no pain in the right temple, what kind of pain is it?

[MrsPMR in reply to SnazzyD]

He describes it as very occasional - a couple of times a day in the last 2 to 3 days, says he wouldn’t call it pain but an ache that doesn’t persist.

[DorsetLady PMRGCAuk volunteer in reply to MrsPMR]

Think you need to ring anyway... it might just be aflare as he's been back to work.. but always best to check and be sure...

[MrsPMR in reply to DorsetLady]

Okay thanks

[SnazzyD in reply to MrsPMR]

What work did he do?

[MrsPMR in reply to SnazzyD]

He’s an outdoor education teacher - youngish (57) and very fit (30 years teaching outdoor activities such as skiing, hiking, mountain biking - now Duke of Edinburgh award and games) but has reduced his activity level down by more than 75%…it may not be enough!

[PMRpro Ambassador in reply to MrsPMR]

"but has reduced his activity level down by more than 75%" - he claims! But still the stress of actually working - even at this stage of the term ...

[MrsPMR in reply to PMRpro]

Yes - the nagging continues!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

still may be to much for his PMR...especially early days..

[SnazzyD in reply to MrsPMR]

The trouble is with fit people and general busy doers, is that the benchmark for cutting down is usually still pretty high and not sufficiently low enough for a systemic upset like PMR/GCA plus steroids.

[MrsPMR in reply to SnazzyD]

Yes understood and it’s absolutely a fair point. He’s been really receptive and non-competitive so far, but it may well be that he is still being way too busy for his condition. Something tells me, he may have to learn this one for himself!

[DorsetLady PMRGCAuk volunteer in reply to MrsPMR]

Yes he probably will! 😂🤣

..and let’s hope sooner rather than later

[PMRpro Ambassador]

We are suspicious but the reality is that whether the average GP or OOH doctor would respond to such vague symptoms is questionable. But any escalation should result in a phone call.

[MrsPMR in reply to PMRpro]

Yes - me too…

[MrsPMR]

suspicious that is!