Possible GCA flare and Pred dosage advice please!

[Horsewhisper]

Hello everyone, I’m looking for a bit of guidance - I have tapered very steadily and two weeks ago, I got down to a dose of 15 mg Pred. I’m also on 12.5 mg Metoject. Once on the 15 mg dose, the temporal headache returned, along with night sweats and increased fatigue, so after a week, I increased my dose to 17.5 mg, which helped a little. Today, my headache is much worse so I’ve gone up to 20 mg. I just wondered how long I should stay on this dose before trying to taper down to 17.5 mg again? The usual OTC pain relief doesn’t have any affect and neither does Tramadol. Any suggestions gratefully received, I will get in touch with the Rheumy Nurse tomorrow aswell to see what she says. Many thanks and best wishes to all xx

[DorsetLady PMRGCAuk volunteer]

Hi,

“Today, my headache is much worse so I’ve gone up to 20 mg. I just wondered how long I should stay on this dose before trying to taper down to 17.5 mg again?”

You need to stay at 20mg until the headache is gone - if you taper before then (and if it is GCA) then all will happen is, it will return. If 17.5mg didn't resolve, then that’s telling you it’s not enough.

[Horsewhisper in reply to DorsetLady]

Brilliant, thanks so much for the info, very much appreciated! I’m already starting to feel a little brighter and hopefully the headache will abate on this dose.

[PMRpro Ambassador in reply to Horsewhisper]

And if the headache reappears even on 20mg - off to A&E/ED is necessary.

[Horsewhisper in reply to PMRpro]

Thanks Pro, will do

[Horsewhisper in reply to PMRpro]

Hello PMRPro, I hope all is well with you. I’ve been on 20 mg Pred for the past 2 weeks and my headache has steadily worsened. It doesn’t seem to feel like the GCA headache anymore, it’s more intense and worse in the evenings. Brain fog and fatigue on the increase. The usual OTC meds gave no effect. Rheumy helpline doesn’t call back or return emails which is really unusual for them... probably lots of Covid distractions going on. Just wondering what to do..hope you don’t mind me seeking your advice!

[PMRpro Ambassador in reply to Horsewhisper]

Is the headache a side effect of the pred? But the first thing I would try is a few days of a higher dose. And if that doesn't work - emergency care is required.

[Horsewhisper in reply to PMRpro]

Thanks for getting back to me - I haven’t had a headache like this before, even when on higher doses of pred. I’ll try 25 mg for a few days and see how I go - and nip to A&E if no better

[PMRpro Ambassador in reply to Horsewhisper]

If it keeps getting worse - don't wait