Pmr or withdrawals

[Leepeelee]

Quick question?

I’ve had more success with the last 3 pred tapers than all previous ones.

The difference is that the last 3 tapers have triggered mild pains, mild fever, mild fatigue all of which lasted for about a week each time. All previous tapers have been a huge struggle with huge pain, awful fever feelings and fatigue.

Here’s the question: If the PMR has gone into remission , would I still experience some pains and discomfort whist tapering the preds? Or are withdrawal pains only there because the underlying illness is still present?

It just seems strange that my tapering has improved so much

[Zareda]

I would like to know the answer to that question also.

[DorsetLady PMRGCAuk volunteer]

You don’t say what dose you are at, but when you wrote last post 2months ago you were at 10mg and having problems. Plus it looks as if you were only diagnosed less than a year ago. Is that correct?

If so then PMR still very active.

If the symptoms only last a week and then resolve it’s steroid withdrawal whilst the body adjusts to new dose. If it’s a flare it just gets worse as time goes on, and the only way to stop is to increase medication,

The steroids don’t cure PMR, they just control the inflammation caused by it - so yes, it’s still there!

One way if helping with withdrawal symptoms is to take paracetamol and/or try a slow plan - this is just one example - there are others - healthunlocked.com/pmrgcauk...

[Leepeelee in reply to DorsetLady]

I was diagnosed in March this year

2 months ago I was on 10mg, it was a fairly rocky road getting down to 10 from a starting point of 20 with 1 flare when I dropped from 11 down to 10. Each taper had been 1mg at a time. Since then, I raised the dose to 15 for a week to get things back under control, then dropped back to 10.

I then managed a 1/2 mg taper every 3 weeks, I’m now at 8.5mg.

The last 3 tapers have been smaller steps but percentage wise not dissimilar to previous

I just wondered if whist reducing, withdrawal pains would still be there even if PMR wasn’t

I’m not getting the same general aches and pains that have been present even after withdrawal has settled down.

Do you know of anybody that has had PMR for less than a year? Pretty unlikely I guess?

[DorsetLady PMRGCAuk volunteer in reply to Leepeelee]

Very unlikely to be gone in under a year. 2yrs min - 4-5 yrs much more common.

Plus you must remember, no matter what docs think or you want you are not reducing come what may to zero. You are reducing to find the lowest dose that control symptoms - and for everyone that may be different - depends on your illness, your circumstances, your body.

Stick with the 1/2mg tapers, but don’t push yourself to make it every 3 weeks, as you rightly say the percentage decrease becomes bigger the lower you go - so you need to go as slowly as you can. Every 4 weeks, or maybe every 6 weeks - your PMR has longer to go than you might think. There is no point trying to rush it - it will only bite back.

[PMRpro Ambassador]

What sort of reduction step compared to what sort of dose are you using?

The withdrawal is thought to be the body adjusting to the change in dose - hence smaller steps being less of a shock to the system and yes, it is there whatever the illness so not necessarily linked to the PMR.

I imagine its something noone has thought of ...

[piglette]

You will never really know if the PMR is in remission until you actually stop taking pred.