To increase Pred or not, is it a flare

[Noraflorence]

Hello all you helpful people.

I am feeling a bit of a whimp and think I know the answers to some of my questions but here goes.

I am still taking 3.5 EC pred for GCA which has lasted just over three years however over the last couple of days have developed a headache in the same place as before diagnosis. This is new and persistent not responding to Paracetamol. I have been today to get blood tests. At the start of all this I had a CRP 58 and ESR 6 since treatment I have had CRP of <1 and ESR 2 throughout however the last test in Feb CRP was 3 and ESR 2. All normal apparently said the consultant. I was advised/ instructed in Feb to reduce by 1 mg every 4-6 weeks to stop entirely by consultant. I haven't done so! I was girding my loins to answer her questions about this in July my next appointment.

I understand that the blood test results will take 2/3 days to materialise on the hospital records. My question is should I start increasing the pred as per a flare now, maybe even take a second dose this evening? Alternatively tough it out and ring the helpline tomorrow which may not be responded to for 48 hours.

If I do increase the dose is it 5mg above the last dose which was working? I do hope it is not going to be back to square 1 of 40 mg once the medics get involved.

My whimpiness is about taking my own action re increasing the dose without medical say so and working out which dose to go for!!!.

Thanks for reading this.

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for a flare, so yes add 5mg to dose you last felt okay - and today -

healthunlocked.com/pmrgcauk...

.. and you shouldn’t need to return to original dose - but do make sure the increase is enough to address the headaches.. if not you might need at bit more, but not as much as 40mg.

Please keep us informed of how thing go….

As for Rheumy’s advice in reducing - I’d be doing my own thing as well…. but you should let them know what you are doing - or intending to do…

[Noraflorence in reply to DorsetLady]

Thank you so much for such a prompt reply, one tends to feel quite alone in these scenarios and so helpful to know knowledgeable people are available .

[DorsetLady PMRGCAuk volunteer in reply to Noraflorence]

It’s why very are here - and been in a similar situation ourselves at one time or another.

[Noraflorence in reply to DorsetLady]

Very much appreciated