flare and a cold - what do I do?

[marionofnorwich]

hello all. In year 4 of PMR which started April 2020 , had just got down to 3mg in April 2022 and then got COVID. I didn’t know about sick day rules (or this Forum) then so everything went haywire. I went back up to 8mg instinctively (no rheumatologist and no guidance from GPs I saw) then after that discovered this forum but by the everything had gone haywire and I have not been right since especially my legs. However I tapered down to 4mg. Felt reasonable and about a month ago dropped half an mg to 3.5. In the meantime went to see a foot mechanic who thought my leg problem was due to tight muscles in my foot and ankles which he mobilised. I started to feel rough again, feet, knees, thighs, lower back, neck shoulders. Feels like PMR so a few days ago went back to 4mg. Now I have a cold and feel totally horrid, coldly and very stiff esp lower back. Question is, do I apply sick day rules"? Should I increase pred more and if so what to? Currently pretty much bed bound. I don’t want the same experience as when I had COVID.

[DorsetLady PMRGCAuk volunteer]

SDR are usually applied if you are so unwell you cannot get out of bed, so could apply them. However it does sound as if it’s a flare- so you could apply that protocol. Either way you do need more for a while. See this link -

healthunlocked.com/pmrgcauk...

.. and back to 4mg… your adrenals will be struggling as well… so I’d stay there for a couple of months, and then try one of the slower tapering plans we talk about [if you aren’t already].

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[marionofnorwich in reply to DorsetLady]

Yes I have been on 4mg for a while and yes, I have had two 9am cortisol tests and short synathecen test all of which show low adrenal activity though improved a bit with the second cortisol test. So it sounds as though I should add 5mg for a few days, although it is not so much that I can't get out of bed as that I keep wanting to get back in it!

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

Yes, and then back to 4mg, and give the adrenals time to regroup…. and very slow tapering after that, maybe only 0.25mg a time [if you can cut 1mg tabs into 4/] and/or by extending the slower tapers.

Adrenals are improving, but still struggling by the sounds of things.

[PMRpro Ambassador]

Like DL - I'm not convinced the problem is needing SDR so much as you are simply on slightly too low a dose for what your PMR needs at present and your adrenals are struggling too - that will make you feel pretty rough.

[marionofnorwich]

So I took 5mg (total) maybe I should continue on that unless I feel worse? I guess I am trying to guard against yo-yoing but going up in small increments rather than knociking it over (the PMR). Yes, adrenals are struggling, I know by the tests but my main problem is very stiff legs, like wooden sticks

[PMRpro Ambassador in reply to marionofnorwich]

The trouble with creeping up is you are always playing catch-up ...

[marionofnorwich in reply to PMRpro]

Yes I didn't mean 'but' I meant 'by' going up in small increments. Phones think they know what you want to say but they don't!