Dosage Advice Please

[Ronnie101]

Diagnosed with GCA 2 years ago, had a couple of flares over time, was down to 18 mg of pred. 2 days ago I woke up with a headache and blurry right eye which persisted all day. As I was away from home and it was a bank holiday, I thought the best thing to do was increase pred to 30 mg. Pain eased a bit and eye improved. Took 30 mg again this morning. Still have frontal headache and eye almost normal. I've not had a call back from my consultant's secretary yet, so wondering what to do next, and where I should go with the dose? Any thoughts? Thanks.

[DorsetLady PMRGCAuk volunteer]

Hi Ronnie101,

Sorry to hear about your flare. Would be inclined to take 30mg for another day or two, hopefully by then you will get answer from Rheumy. If you feel okay then, and still haven't had a response then maybe try dropping by 2.5mg.

If you've only been at 30mg for too long you should be okay to drop down again in 2,5mg reductions to 20mg, but you must give enough time between each drop to ensure symptoms don't re-occur.

Hopefully you'll get a response today.

[Ronnie101 in reply to DorsetLady]

Thanks Dorsetlady, that sounds encouraging and sensible.

[DorsetLady PMRGCAuk volunteer in reply to Ronnie101]

Let us know how things go.

[piglette]

Ronnie, I am so glad you have got pred to take. At least you know about GCA and the pred will catch it even on a Bank Holiday which is good news.

[Ronnie101]

Just an update: Vision more or less back to normal, though still getting headaches in temple. Haven't chased consultant's secretary as I have an appointment with consultant on monday. Still at 30 mg Pred a day. As I hadn't heard back I contacted GP who said stick at 30 for the time being, though that was before Blood test results were published (this morning), taken coincidentally the day after the "flare" - the ESR and CRP were normal!

I'm aware that the ESR and CRP don't always show up as being abnormal when a flare is active in some people, but they have with me in the past, so I can't understand it.

I think I need to clear with the consultant a better system for getting urgent advice in these cases - it can't be simply a choice of waiting for a call back in vain, or a trip to A&E. How do others manage these situations?