To be GCA or not to be that is the question.

[Singr]

I’ve been out of circulation for wee while there. Went into yet another steroid withdrawal flare where my life seems to revolve around. Full week now down at 7.5 mg. I always get that feeling of never being in a fully awake state, like something is dragging you down to sleep all the time. A wee bit achy and hard to get up and down, nothing I can’t handle. However, I have brain piercing headaches like the ones I used to have. They last seconds but stop me in my tracks. These are not at the sides of the head or the jaw but in my forehead and centre of my skull. I was diagnosed with suspected GCA but because I had gone so long with false diagnoses I was put on steroids in a rush it could not be confirmed if I definitely had it. Can’t get in touch with GP or Rheumy. Anyone think these headaches are cause for concern? Also I’m wanting to taper down to next level at 7mg. Would it be unwise to try this next week?

[PMRpro Ambassador]

I'd definitely postpone the drop - see if it stabillises or not first. The headache - can't really help there.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRPRO - don’t reduce, and although I don’t think headaches are GCA, but they do further investigation.

[GOOD_GRIEF]

Your headache symptoms warrant further investigation. Perhaps a consultation with a neurologist is in order.

[SheffieldJane]

I agree with your other advisors. What about A&E? I hear that it is still quite civilised and you might get to the bottom of this once and for all. I get that dragging down into sleep feeling and literally cannot keep my eyes open. I was diagnosed by ultrasound scan - other scans etc showed nothing. ( GCA)

[Heron82]

It could be a trigeminal headache. May be worth trying to speak to your GP or rheumy by phone. I hope it resolves soon.

[Singr in reply to Heron82]

Ohh what is a trigeminal headache?

[Telian in reply to Singr]

Very painful.......

[Telian]

As already said don’t reduce yet - doesn’t sound like a GCA headache from what you say but have further investigations.

[Singr]

Thanks for all of this. We are having difficulties calling our health service for GP phone appointment. Phones out of action. Think I'll email my rheumy's secretary and ask for a phone appointment. To be honest I prefer to bypass the GP because they demonstrate that they have so little knowledge of this condition other than looking up google which I can do myself. It's scary.

[Heron82]

nhs.uk/conditions/trigemina...

This link will provide some information. My rheumatologist suspected that the GCA symptoms I was experiencing may be more typical of TN because I have never experienced any jaw claudication (pain on chewing). However, my symptoms and pain are temple associated and long lasting and not similar to those described for TN; they are not relieved by painkillers but are relieved by steroids.

[Singr in reply to Heron82]

Thanks. Pretty sure it’s not this. The pain is felt much further up on top of my head.