Tapering

[Shirpam22]

Hi all

Started with pmr in Dec 2020 on 15mg for 4 weeks but that didn’t work so dr put me up to 25 mg. Wonderful. Had that for 4 weeks than 20 mg for another 4 weeks. All good. Then 4 weeks on 15. Still all good. 5 days ago reduced to 12.5. Was good for first 3 days but for the last 2 days have felt awful. Weak, fatigued, achy all over (although not like the aches I got when first had pmr). does this sound like pred withdrawal? Had a blood test today so will hopefully hear from dr in next day or say. But would like to know if this is probably withdrawal, or have I got some other weird thing!

[SheffieldJane]

It could be withdrawal, or the body’s not quite ready for this last drop, you’re ill, or you’ve done too much. Symptoms are a better indicator than blood tests, now you are on Pred. Your inflammation was tricky to control at the outset. I might go back to 15 mgs and if it settles, reduce by 1mgs every 4 weeks. Do painkillers help? They won’t really if the symptoms are caused by PMR.

[Shirpam22 in reply to SheffieldJane]

Thanks for that. Am taking panadol but doesn’t seem to be doing much. Did do a lot of work on Sunday, so perhaps that set it off.

[DorsetLady PMRGCAuk volunteer]

If you were good for first 3 days on new dose doesn’t sound like steroid withdrawal - that usually comes on immediately. More likely overwork on Sunday or too low a dose, or a combination of both. However, just be aware blood test done recently may not show up anything, very often lag behind symptoms.

Like SheffieldJane would say back to 15mg, then smaller monthly reductions.

[Shirpam22 in reply to DorsetLady]

Thanks for your thoughts. Should talk to dr tomorrow, good to be armed with more info.

[DorsetLady PMRGCAuk volunteer in reply to Shirpam22]

Remember the reducing mantra - no more than 10% of current dose....for 15mg that 1.5mg . 2.5mg maybe recognised “officially” , but very often it’s too much.

[PMRpro Ambassador]

I'd be inclined to say you probably just aren't quite ready for 12.5mg. You needed 25mg at the start and that suggests you are likely to need more pred rather than less for a while. But you have to do your bit - being on pred and feeling great is NOT permission to go back to normal activities. What was the work on Sunday? It could mean at the computer (though I suspect it doesn't?) but even spending a long time sitting is a trial for muscles that aren't too well. Someone said yesterday they had thigh pain - almost certainly from driving and a lot of gear changes after3 weeks not driving.

The pred is dealing with the inflammation, mopping up the mess created as the bucket overflows, but the actual disease is still there, the dripping tap hasn't been repaired. Your immune system is still deranged, still attacking your body tissues, including muscles, in the same way flu would act, And that leaves your muscles intolerant of acute exercise. Ask them to do more than they are able and they will tell you about it. Not at the time, for some reason they are unable to say to you they've had enough, not until it is far too late to save you from DOMS, delayed onset muscle soreness. The aches you get after exercise are because connections in the muscles are torn by the movement of the muscle fibres in exercise and must heal - that is what training is, they are stronger and able to cope with a new level of activity. In PMR, as in aging, this proprioceptive system is impaired - it takes much longer to heal and causes more pain than you would expect in the meantime.

So training in PMR patients needs to be very slow - starting well below a level at which you will suffer pain and building it up very slowly until you find what causes you to have pain the following day. By slowly I mean adding not more than 2mins a day to a walk or the time you spend mowing the lawn or cutting plants back. And repetitive action is poison in PMR - even a few cuts with those secateurs you wielded for an hour pre-PMR can make your hands and arms ache unbearably, especially if it was a tough bush! Once you find the level that you can feel next day, you go back to the previous level and stick at that for a couple of weeks to "train" before starting the building up to a longer session again. And alternating rest days are crucial, especially if you do have any pain at all - go out and repeat the activity and the muscles will never heal properly and continue to hurt but never get stronger.

[Shirpam22 in reply to PMRpro]

Thanks for that. I must admit when I felt well I didn’t even think about not doing too much. Guess I will have to rethink what I’m doing. This is the first time I have had such a bad reaction.