Bit of a flare?

[Paulx222]

Haven't posted for sometime as I've been happily tapering away from 12and now down to 5 mg......

Have noticed increased arm/shoulder and hip pain on the right side over the past few days. Nothing like at the onset of all this and mainly it's the right side....

Was thinking of leaving it until after the weekend but I'm thinking a brief increase might be in order.....what would members recommend and for how long to get things settled?

Things have been going pretty well to date so a bit disappointed but have to just grin and bear it.

Wanted to get off pred ASAP to see if my twitching and jerking improved. Have had lots of tests in relation to that EMGs and neuro appts plus a CT and Brain MRI and all have come back normal.....so in that regard I should be extremely grateful.

The twitching and jerking continues but has definitely improved a bit and I'd put that down to tapering but who knows 🤷‍♂️

Hope everyone is well.

Paul

[DorsetLady PMRGCAuk volunteer]

Usual advice for flare is up by 5mg for around 7 days... [even if it a just a bit of one!].. best to get it under control - and then back to 5.5mg or 6mg maybe..

[Paulx222 in reply to DorsetLady]

😊😊

Thanks as always, hope you're well

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Good thanks.👍

[PMRpro Ambassador]

By "mainly" does that mean it is on both sides but unevenly?

I agree with DL - treat it as a flare, go back to 5,5mg, take a month or two break from tapering and try again.

[Paulx222]

Not really.....when all this started I started mainly on the right shoulder then the left shoulder started a couple of days later but never to the same extent.....the two hips followed a couple of days later, again the right worse than the left but more equal than the shoulders.

Then a bit of morning finger pain.....both sides.....

And generally feeling like death warmed up....waking 2am....in agony .....arms like glass hot showers needed to even get functioning.

Now the left shoulder still remains excellent right shoulder and right hip are pretty poor since I dropped to 5mg. Left hip is stiff but nothing like the right.

Sorry for the length of this 🤷‍♂️🤦‍♂️.....probably as much for me so I have a record!

I am NOWHERE near what I was when I first got hit by this but I do have pain and stiffness but totally right shoulder (not left) and mainly right hip with a bit of stiffness in the left.

Nothing else. May be a bit tired but I'm 49 so maybe its not as fatiguing for me as it is for more mature people? Dunno.

Anyway thanks as always PMRpro x

Hope you're good

Paul

[PMRpro Ambassador in reply to Paulx222]

At what dose did it start to return? That is the dose you need to be above. You should never feel worse at the end of a taper step than you did at the start.

I don't know - I was 51 when it started and I noticed that fatigue more then I think. But I needed to do more back then, I was still working, albeit at a sedentary job, couldnt have done anything else!! Couldn't have commuted either. The fatigue now is due to other things - and I'm a lot older.