Reducing to 5.5 mg of pred on dsos method and have new pain is this withdrawal of pred or flare

[Daffodilia]

Diagnosed Oct 2018

[SnazzyD]

What sort of pain? Is it familiar?

[Daffodilia in reply to SnazzyD]

Yes its a return of the burning sensation in base of spine and calves and back of thighs but not as bad as when PMR started - also some pain in left shoulder and the usual pain in middle of shoulders

[Daffodilia in reply to SnazzyD]

Bit better to day so will persevere for a few more days - thanks for your reply

[Louisa1840]

I think it's really difficult to differentiate between: flare/ steroid withdrawal/ aches and pains because of ageing etc etc. All you can do is stick with what is for a few days and then go back up to a few mgs above when you last felt comfortable and then down to that dose. Also, try simple analgesics to augment things. Below 10 mgs it all seems to be a juggling match. Throw in our poor adrenal system trying to catch up with it all and it's no wonder our bodies don't know what's going on? Patience will win in the end and continuing to be positive........

All the very best to you and know that this wonderful community of fellow travellers are with you every step of the way!

[Daffodilia in reply to Louisa1840]

Is a few days - three? I stuck it for 5 days in March - would withdrawal be longer than that? Waited til it got really miserable before.

[Louisa1840 in reply to Daffodilia]

I think pred withdrawal is fairly immediate and then insufficient pred for your PMR symptoms would be 3 days plus but it all depends what's going on in the background. In the end your quality of life is what matters. I've just gone back up to 10 (from being in lots of pain on six). I'm staying here for a while and then will try eight. I'm also taking codeine for hip pain which seems to be helping.

Do what you need to do for you to keep you comfortable. There are no rules and we are all individuals.

We're all here for you....

[PMRpro Ambassador in reply to Louisa1840]

Mmmmm - but don't drop 2mg at a time if that is what you mean. No drop should be more than 10% of the current dose.

[Louisa1840 in reply to PMRpro]

So even if you've been down to a lower dose and had to go back up because of a flare, you should still drop really slowly again? I thought it was okay to come back down relatively quickly? Under 10 mgs. in the past, I have tried coming down using DSNS and by half a mg at a time. I am guessing my comfort zone is around 7? My problem seems to be inlammatory arthritis too and I think bursitis in the hip possibly caused by PMR . It's hard to know where one condition stops and another starts.

[PMRpro Ambassador in reply to Louisa1840]

You said you are staying at 10mg "for a while" - you can only drop quickly if you stay at the higher dose for 7-10days. I assumed you meant a lot longer than that.

[Daffodilia in reply to PMRpro]

Only dropping by .5 mg - a bit easier today after 4 days on 5.5 so will try for a week before increase I think - thanks for help

[Daffodilia in reply to Daffodilia]

Thanks for your reply

[DorsetLady PMRGCAuk volunteer in reply to Daffodilia]

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 you 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.

[Thelmarina in reply to Louisa1840]

Thanks for this. Excited to be at 7.5mgs but horrible PMR pain round the shoulders so back to 8mgs, possibly more, but you’ve reminded me to be patient and to feel sorry for my poor old body doing the best it can! 👍😀

[PMRpro Ambassador]

Depends what you mean by "is it withdrawal of pred" - if you have gone to too low a dose the withdrawal of pred has taken you there.

The whole idea of the slowed tapers is to reduce the likelihood of your body noticing a change in dose and objecting. "Withdrawal rheumatism" usually starts as soon as you change the dose and is more likely if it is a big jump, the reason we make such a thing about small reduction steps. A flare will happen once you get to a dose that is too low to clear out all the inflammation and then is likely to get worse over the following days. It might happen quickly if you were already on the borderline of the dose you needed.