Are tender temples necessarily GCA?

[Jontie]

On a number of occasions now, I've had tender temples on one side of my head (this evening included). The veins (or is it an artery?) in that area feel swollen compared to the other side. When I first had this I contacted rheumatology who put me on 60mg pred as a precaution. Subsequent ultrasound was negative and I was ok after dropping to 15mg pretty quickly. I'm now on 12.5mg and the first time I got sore temples on that dose I decided to take an extra 5mg and the next day it had subsided. Rheumatology said it must have therefore been a pmr flare as 17.5mg wouldn't help GCA.

I didn't realise that pmr could cause swollen/tender temples. I assumed it was always indicative of GCA.

I just wondered what you all thought about this?

By the way, I know you're not supposed to use pred like this but, as I've become paranoid about GCA I've just taken an extra 5mg. Hopefully it will do the trick.

[PMRpro Ambassador]

Well I do know other rheumatologists who think that 15mg can be enough - the reason they use such high doses is because of the high risk to vision and to get the inflammation down very quickly. But if it is in the early stages there is no reason at all why 17.5mg wouldn't do the job.

The sore temples bit with PMR symptoms would almost always lead to a GCA suspicion/diagnosis. If it is GCA it would be a swollen artery you can see - where is it?

[Jontie in reply to PMRpro]

Thank you for the prompt response. It is on the side of my head, about a cm higher than my eye.

[PMRpro Ambassador in reply to Jontie]

That is a suspicious position - sort of along the side of specs if you wear them?

[Jontie in reply to PMRpro]

Exactly.

[DorsetLady PMRGCAuk volunteer in reply to Jontie]

Would agree with PMRpro - don’t think Rheumy Dept can dismiss GCA with only a small increase without actually seeing it.

Like this?

[Jontie in reply to DorsetLady]

They did see me the first time, but that was after being on 60mg for two days, by which time it was normal.

[Heron82]

Hello,I am doing exactly the same thing after developing pain in my teeth, slight temple headaches and a tender scalp. I have taken 17 mg for 3 days before returning back to 12 mg today. However sat eating breakfast my temples are aching again. Ugh! Good luck.

[Jontie in reply to Heron82]

It's so tiresome not knowing isn't it. I'm desperately trying to get my dose as low as possible before my covid jab on Thursday, but I'm constantly forced to increase the dose. I'm becoming far too aware of how my body feels recently. Constantly on the lookout for gca symptoms. My brother in law, who is a consultant radiologist in vienna, thinks I should have an mri scan of the arteries in the head. He says that if this is done properly, it can give a good indication of presence of GCA. However, nothing of the sort has mentioned in the UK!

[Heron82 in reply to Jontie]

Don't worry about the vaccine, you should be absolutely fine in mounting an appropriate immune response that will then be boosted and more protective on your second jab. I've not had any diagnostic tests, other than an eye test when I first went to casualty after a few days with a thumping temple headache and tender scalp. They are so distinctive as being just located at the temples. Does your local hospital offer the axillary ultrasound scan?

[Jontie in reply to Heron82]

Yes. I had one after the first episode. But, as they said themselves, it was of limited value, because by the time I'd had it, I'd been on 60mg for a couple of days.

[Heron82 in reply to Jontie]

Same thing happened with me, no point of a scan if taking 60mg.

[PMRpro Ambassador in reply to Jontie]

Don't - poorly controlled disease is more of a concern to the doctors than the dose you are on. Even cancer patients who are very immunosuppressed are mounting a good immune response in response to the booster jab - and you must continue to take all precautions until a week or two after the booster anyway. Protection will never be 100% but it is quite a bit lower with just one jab.

[Jontie in reply to PMRpro]

That's reassuring. Thanks. I'll continue on 17.5 for a while.

[Bella1310]

Yes my husand has recently has the same difficulty, prescribed lowering of Pred to 10 made him feel rough and displaying sore head symptoms, low appetite and fatigue. Raising Pred by 2.5 made a big difference but he is not lowering it again yet. He has Rheum appointment next Friday and a blood test before that. His Rheum likes to check CRP readings to find out the level of inflammation and uses tht s a rule of thumb. Good luck, it sure is a complicated health issue!

[PMRpro Ambassador in reply to Bella1310]

Would he try 1mg at a time? even 1/2mg can be the difference between OK and not. He may well get lower - just not quite to 10mg yet.

[Bella1310 in reply to PMRpro]

Thank you, my thoughts exactly. Up to a month ago the reduction was 2.5 every 4 weeks, and my husband was coping very well then this recent Rheumy instruction was 10 to 5 which I thought was a very big jump. Sorry my previous post is incorrect, the dose was lowered to 5). The appointment next week will sort it out, I don't have a further prescription beyond next week, so need tablets anyway. Thanks for your helpful response!

[PMRpro Ambassador in reply to Bella1310]

What on earth is the rheumy up to? You slow down as the dose gets lower, not speed up. No reduction step in a taper should be more than 10% of the current dose and even if you get away with a bit more above 10mg, the guidelines all say 1mg at a time and not more below 10mg. And preferably once a month, 3 weeks minimum.