Steroid withdrawal pain or PMR pain

[IdasMum]

Please remind me which is the one which comes first when tapering.

Thank you.

[SnazzyD]

Generally withdrawal is quicker to show because the body has a sudden change to deal with. Depending on the person this can be hours to a few days and it lasts for a few days. PMR tends to take longer because the inflammation takes a bit of time to build up to levels that cause symptoms. This seems to be from others’ reports to be from a week to much longer.

However, I certainly remember symptoms of my GCA coming in within a day when I wasn’t absorbing Pred properly but I think it was because my disease activity was still high in the early weeks before it was under control. It was already pretty built up so with Pred low it took no time to show. So, I suspect people’s existing background inflammation will affect things.

[DorsetLady PMRGCAuk volunteer]

This is what i usually say -

Steroid withdrawal v flare

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days. It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some it can be eased by paracetamol.

A flare happens when you’ve gone below the level of Pred your illness requires, and take anything from a couple of days up to 2 weeks to materialise- and (usually)the symptoms are similar to those pre diagnosis. Paracetamol will not help. The only thing that does is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

[IdasMum in reply to DorsetLady]

Thank you. New dose taken on Tuesday. Aches around neck more than of late. Paracetamol relieving it.

[DorsetLady PMRGCAuk volunteer in reply to IdasMum]

Sounds like withdrawal symptoms then...hope so and nothing more.

[IdasMum in reply to DorsetLady]

yes, hope so

[Joannarosa in reply to DorsetLady]

I followed this advice from you a couple of weeks ago, thanks - worked like a charm! The first day on the minus-5 dose was a bit stiff and sore, but it wore off fast. I'm really grateful for such sensible suggestions!

[DorsetLady PMRGCAuk volunteer in reply to Joannarosa]

Good!

[PMRpro Ambassador]

Steroid withdrawal usually happens immediately and then improves. In some people it may take a couple of days but it always improves afterwards. A flare takes longer to appear and then gets worse.

Unless you are experiencing effects due to poor adrenal function, in which case it MIGHT take longer to appear and then will possibly get worse if your body is not catching up with cortisol production - but is still not a flare of PMR.

[Triumph650]

It can be frustrating when you get conflicting ideas.

My GP says that's the dose I take should be such that there is no pain, if the body is in pain it's not repairing itself, mmmmm.

My specialist says to get off prednisone ASAP, I said at what rate, he said 1mg a month or even as fortnight if I can tolerate it.

There lies the conflicte, I think the medical profession needs to experience some of these conditions.

I am 68, male and fairly active, I find the more active I am the better I feel, I cycle and go to gym doing weights for shoulder strength, if I have a lazy day I pay for it with shoulder tightness

[PMRpro Ambassador in reply to Triumph650]

How does the specialist expect patients to get off pred if the underlying cause of the PMR is still active? They don't tell patients with RA to stop their medication because they have no symptoms, they accept they would return.

[Triumph650]

Yes that’s the frustrating thing, I follow my instincts, i have been reducing by 1mg a month, this month I went to 8mg and I know that’s my limit at present.