Gca undiagnosed

[Helliwelli12]

Hi not posted on here for a while. I've been on prednisolone for just a year and now down to 1 mg of prednisolone. However starting to get a little head pain occasionally a twinge and feeling confused of late at work and is becoming noticeable. I am not due to see rheumatology until March 2025. Thinking of going to doctor as I feel like I am getting dementia type symptoms memory problems and miss placing keys etc. Has anyone been through this and what is your advice?

[SnazzyD]

How worrying for you. I do think you need to go to the doctor because you have noticed changes in your cognitive function. There are a variety of causes that need to be considered.

What kind of pain in the head do you have exactly?

[Helliwelli12 in reply to SnazzyD]

Hi I have been getting sharp twinges at the side of my head since being on 1 mg it's not constant but comes and goes. Going to seek medical advice next week .

[SheffieldJane]

This did happen to me and GCA/LVV was diagnosed by a specialist ultrasound scan. Basically feeling headachey and unwell. My Rheumatologist is very thorough, I’m fortunate in her.

[SnazzyD in reply to SheffieldJane]

Yes, I remember before being diagnosed with GCA, I kept losing my thread when speaking so badly I thought I had something wrong with my brain. When my GCA blew up properly they did neurological tests and a CT scan of my head that showed nothing. Once Pred was started it went though it was replaced by Pred fog.

[PMRpro Ambassador]

If your diagnosis was GCA (and yes, I know it was) I am appalled that you weren't kept under closer monitoring than that. To be down to 1mg after only a year is also mega fast and I really would not be surprised if the GCA turns out to still be active. You definitely need medical advice and soon.

[Helliwelli12 in reply to PMRpro]

Hi I had a temporal biopsy that was negative. Just told to taper but agree with you have been left by the wayside. I am planning to see a doctor next week about what to do.

[Nextoneplease in reply to Helliwelli12]

Excellent, I’m glad you’re following this up. It could be anything but GCA is not ruled out (as I’m sure you know) by a negative biopsy. That just shows no proof one way or the other.

Good luck at the docs and do keep in touch. It sounds to me like you’ve been encouraged to do too much, and on too little pred x

[PMRpro Ambassador in reply to Helliwelli12]

Yes - but what were your symptoms that led to having a biopsy since there must have been some suspicion. And a negative biopsy is the worst of all results - it doesn't mean anything except they didn't find what they were looking for,

[Helliwelli12 in reply to PMRpro]

I had blood results that suggested inflammatory disease a sharp pain on one side of my head, shoulder pain , low grade fever and pain in one eye. Now since being on 1 mg of prednisolone have occasional head twinges, fatigue my memory is terrible, always loosing my keys. Anyway going to doctors for advice and going to push for a head scan

[PMRpro Ambassador in reply to Helliwelli12]

The fatigue and memory problems could possibly be adrenal insufficiency - your adrenal function not recovering to keep up with the reduction in pred dose. But the pain is more of a concern. However - eye pain isn't common in GCA so there could be something else going on.

You are in the UK aren't you? How about contacting the local CUES service?

primaryeyecare.co.uk/servic...