Further Update After Flare

[Paulx222]

So.....bit of an update.....having had a dip in symptoms a couple of weeks after dropping from 12.5mg to 10mg of steroids I finally took the advice to bump back up from 10mg to 15mg in a bid to clear up whatever inflammation build up there is in my body having clearly gone too low too quickly......

Bit down to be honest as the jump up 5mg hasn't had the desired effect as yet....if anything, my symptoms seem to be continuing to worsen which is a bit of a blow.....I feel I should have bumped myself back up sooner and of course, because the desired effect isn't being realised all the old doubts about what's wrong keep coming back.

On the plus side, it's only been four and a half days and also on the plus point, I had been doing absolutely great for 3 weeks prior to all this so hopefully things will start to clear up again in a few days.....who knows.....

Thanks again for all your messages and advice, very gratefully received both on here and privately

Hope everyone is well 🙂

[DorsetLady PMRGCAuk volunteer]

Give it a bit more time... you can stay a higher dose for up to 14 days under flare protocol without impacting on drop back down...

But when things are back under control probably best to go to 12.5mg/12mg rather than 10mg - and reduce by 1mg time from thereon.

[Paulx222 in reply to DorsetLady]

Yep......I'll keep plodding away. Hope it kicks in at some point.

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

I hope so… …but if it doesn’t then medical advice is required…

[Paulx222 in reply to DorsetLady]

Understood. Thanks

[PMRpro Ambassador]

And do bear in mind that if things continue to get worse - do seek medical advice as it COULD be GCA or LVV developing.

[Paulx222 in reply to PMRpro]

Will bear that in mind.

Thanks

[sidra1968]

Sounds similar to my two experiences with flares when tapering. Give it a bit more time, once it took around 9 days for me to notice much improvement. I know what you mean though about how it makes you questions things and messes up your mind a bit. BUT then I figured it most likely IS PMR, once the upping of the dose did make it go away after the week/9 days or whatever. I am now much less stressed about any future flares during tapering efforts. Keep us updated please.

[Paulx222 in reply to sidra1968]

Thank You Sidra x

Gives me a bit of a lift that.......yes.....it has messed with my mind a bit but I'll keep at it and hope things improve.

Hope you're well

[sidra1968 in reply to Paulx222]

Thanks, I am finally down to 17.5 mg and going to make myself stay there at least another 3 weeks. I am also back to work part-time at a physical job and that has helped me mentally. I actually usually feel quite well when there, which has surprised me. Sitting at home in a recliner for over a year and trying to figure out what was wrong with me (not to mention the money I spent, good God!) was pretty brutal on the psyche.

[Paulx222 in reply to sidra1968]

Blimey, so many tough stories with this thing.....I'm glad you're making progress and work is going well.

Hope it continues.