I dropped from 12 to 10 nine weeks ago and things are getting worse

[Celebrant]

I had a horrible 5 days at the start of this drop--then a couple of weeks okay and now I hurt all over. My feet are killing me and it is very hard to walk. I am tempted to go back to 15 for a week and then back to the 12--or is this just something to push through. I can lift my arms straight over my head but can not bring them up from the sides to over shoulder height.

[Hidden]

Hi celebrant. It sounds like you need to go back to 12mg if that worked. I bounced about a but between 12 and 10mg then stayed at 12 for a few weeks and did Dsns to get to 8mg now. Hope you can agree this pred blip with gp. Better to get it under control now at 12 than end up at 15mg again.🌻

[PMRpro Ambassador]

I suspect you have dropped too far for your PMR at present. 1mg at a time is enough.

The time to push through is when it is steroid withdrawal discomfort - what you had first. When it appears a few weeks on it is a sign you are on slightly too low a dose and the left-over inflammation has built up to the stage where it causes symptoms again. Pushing through now would just let it get worse.

[SheffieldJane]

It sounds a bit flare like to me and a stitch in time saves 9. Have you been overdoing things or under some stress. PMR/GCA just feeds off it. I’d go back to 12 until it settles, higher if you have to. I have heard PMRPro talking about a symptom that feels like walking on sharp pebbles on a beach.

[Hidden]

Hi Celebrant, So sorry to hear this... how disappointing for you! I hope you get it sorted out soon and get back to feeling "okay." These diseases are fickle beasts aren't they! : (

[Rugger]

Hi Celebrant, as the others asy, it sounds like you've dropped too much, too soon. When you get rid of the inflammation that seems to have built up over the last 9 weeks, consider tapering your drops very slowly. Many of us taper our drops over a month or more, even so, I flared when tapering at 1mg / month. Now I'm tapering at 0.5mg / month and I've still flared!

Have a look at 'Tapering steroids' under the Topics on the right hand side of this page. Scroll down to find the 'Steroid Taper Web Application' that has been devised by Sandra, who has PMR and was studying computer science. You'll find many different taper scedules there, including the Dead Slow Nearly Stop (DSNS) plan that many of us use.

When I flared last summer, like you, I couldn't lift my arms above the horizontal.

Click on my name to see the graphs of my flares and tapers!!

[Purplecrow]

Ditto the previous comments...perhaps now you have a baseline for the difference between steroid withdrawal and too low a dose of pred. One starts quickly, the other takes a bit of time to build up a head of steam.

Reckon you dipped below your necessary dose..sorry.

[Celebrant]

Okay kids--I didn't realize those wicked night sweats--or for that matter day sweats could signal a flare. I'm too old to have learning experiences!

[PMRpro Ambassador in reply to Celebrant]

Life-long learning is the "in" thing!