Advice please pmrpro

[Pamela60]

Pmrpro as an expert, can you explain this?

I've just had an ultrasound on both temples which is not showing active inflammation yet I've had a terrible night with excruciating headache on bilateral temples. I felt dreadful during the night sweats on and off as well.

I've just finished a week of 40mg pred, dropping to 20 mg today.

After taking meds this morning my headache eased straight away, so I'm confused 😕

Could it be anything else.

I'm starting tocilizumab beginning of November.

Thank you

[SheffieldJane]

Hopefully PMRPro will be along soon with her invaluable advice.

For what it is worth, had I had a night like that I would have called an ambulance or at least protected myself with more Prednisalone. I would not taper at present and seek medical advice about temporarily increasing my dose. The big worry is your eyesight. Report everything to your doctor.

[Pamela60 in reply to SheffieldJane]

I feel OK now just washed out. I thought of increasing dosage but then received results of uss saying no active inflammation. It flummoxed me and thought is it all in my mind.

[SheffieldJane in reply to Pamela60]

A small percentage of patients do not show inflammation in their bloods, unfortunately and whilst on Pred it is being controlled. It is better to be safe than sorry. I am so glad that you are out of pain. I would have taken the efficacy of Pred as a sign that it was GCA. Do not tolerate another night like that - please.

[Pamela60 in reply to SheffieldJane]

It wasn't my bloods it was ultrasound scan results. My bloods have been variable last couple of months.

[SheffieldJane in reply to Pamela60]

Sorry my mistake. It would be great if you were in the clear but your night sounds awful.

[PMRpro Ambassador]

Impossible to say - except I don't know the u/s functions with regard to skip lesions: GCA doesn't affect the artery evenly and it may be affecting an area they didn't couldn't look at.

Why did they say drop the pred dose when they are putting you on to tocilizumab? Or why are they waiting another few weeks?

[Pamela60 in reply to PMRpro]

Dr wanted me to go to 40mg for a week then drop to 20mg.ive just received my next appt for 31st plus all bumph on tocilizumab

[PMRpro Ambassador in reply to Pamela60]

Honestly don't get why they told you to drop so far so quickly, Have you spoken to a doctor?

[Pamela60 in reply to PMRpro]

No I didn't because when I took my meds at about 0630 by 0700 the headache eased.

Then life and two grandchildren on half term got in the way.

If it happens again tonight I can ring helpline.

Thanks again - as I said I was worried it was all in my mind,.

[Mahnahvu]

As you probably know, ultrasounds for GCA can vary in their accuracy depending on the operator. So it is possible you have a false negative. The Bristol Symposium Review indicates that of those who received a positive biopsy, 49% presented with a headache, it being the most common symptom (Table 4), but a headache alone only represents 46% positive predictive value. rcpe.ac.uk/sites/default/fi...