Is this a flare?

[Hope_full]

Good morning, I’m 68 and diagnosed with PMR last October, 2023. I started at 20mg. No problem with tapering until February 29, 2 weeks after I started 7.5 mg. My neck (turning both ways and especially looking down) started getting sore and stiff on both sides. Tried acetaminophen and physical therapy, but it wasn’t getting better, maybe a little worse after 9 days. I realized my initial symptoms of PMR were neck related like I was getting, but I was also feeling quite unwell/nauseous too. Thought it might be a flare, so I upped my dose to 10 Saturday, minimal help, so went to 12.5 for 2 days, felt better, still a bit unwell, then 10 mg (today). Haven’t heard back from Rheumatologist after messaging her yesterday. This morning only some discomfort on my left side of neck. And slight nausea, took some Pepcid for that. So disappointed in myself. Any thoughts, thank you!

[DorsetLady PMRGCAuk volunteer]

Initial thoughts, too fast a taper, which has just caught up with you…

This gives usual advice for dealing with a flare - and you need stay on increased dose long enough to get things back under control - 7-10 days usually does it, but you can stay 14 days.

Not sure which Saturday you upped dose initially - 2nd or 9th? .. whichever it was obviously makes a difference to how much longer you can stay in increased dose before it impacts on your drop back down. See this -

healthunlocked.com/pmrgcauk...

Secondly you have reached the level where you adrenals need to start thinking about working again - so also look at this -

healthunlocked.com/pmrgcauk...

It does sound very flare- like, but are you sure you haven’t you done anything too adventurous that might have triggered it?

But whatever it is, you need to significantly slow your tapering down.. for both your illness and your adrenals.

[Hope_full in reply to DorsetLady]

Thanks for the quick reply. Started to up my dose on March 9. 10 mg, then 12.5 for Sunday and Monday, feeling much better, but still a bit unwell. I thought the taper was a little too fast. Are the adrenals causing the unwellness feeling do you think. I know at each taper, it would last only a couple days about 7 days after taper, but this has been 4 days of feeling unwell. Thank you!

[DorsetLady PMRGCAuk volunteer in reply to Hope_full]

Feeling a bit off for a few days after a taper is steroid withdrawal as described in the link I sent “ flare versus steroid withdrawal “.. but now you are below 10mg it likely to be a combination of flare and adrenals as I said..

So I suggest you treat as a flare - and once under control then a much slower taper as advised by PMRpro…..

[Hope_full in reply to DorsetLady]

Thank you!

[PMRpro Ambassador]

You are never tapering relentlessly to zero pred - you start with a dose that is likely to be higher than you will need and then you taper it slowly, a process called titration, to find the lowest effective dose: the lowest dose that gives the same relief as the starting dose did.

Down to 10mg most doctors say 2.5mg steps but that is too fast for some. Once you get to 10mg, the steps should be reduced to 1mg at most - some struggle with even that. YOu know you have reached the dose you are looking for when symptoms start to reappear and then you go back to the previous good dose. As you get lower it pays to slow down the rate and the size of the steps down. Going too fast puts you at risk of overshooting.

It sounds to me as if you have overshot - and now you need to go back up to deal with the flare that has resulted. Then you will need to taper more slowly. What steps down were you using? And how often?

[Hope_full in reply to PMRpro]

10 to 7.5 for a month then 5mg

[PMRpro Ambassador in reply to Hope_full]

Now you are at 10mg and below that is FAR too fast. You need to slow down to 1mg at a time and while a month is just about OK, no faster. Were you OK at 10mg? Are you improving on 12.5mg?

[Hope_full in reply to PMRpro]

Yes, I was ok at 10. The pain is all but gone after 1 day at 10 then the next 2 days at 12.5. Still feel nauseous, but not fever, and negative on a covid test.

[Hope_full in reply to Hope_full]

I should have also said I only felt pain at 7.5 after 2 weeks is when it started. Went to a physical therapist and tried acetaminophen. The acetaminophen helped me sleep a little better. I just did some lab tests CRP and Sed rate? Also she ordered X-ray for osteoarthritis for joint pain which I’ve completed both. The rheumatologist is concerned the increased prednisone may affect the results.

[DorsetLady PMRGCAuk volunteer in reply to Hope_full]

2 weeks after a reduction is spot on for a flare to materialise… Pred at any level may well affect the blood markers, which is why our mantra is - symptoms, symptoms, symptoms !

[PMRpro Ambassador in reply to Hope_full]

Yes, as DL says, very typical time to show a new dose isn't enough, And the rheumy should know - symptoms ALWAYS trump lab results. You might need 8mg, you might need 9,5mg - but you need more than 7,5mg at present. You will get lower - just not yet.

[HeronNS]

Looks like your taper has been in 2.5 mg steps so far? Can you get 1 mg tablets so you can taper by 1 mg from now on? In fact I only ever tapered by 1 mg between 15 and 10, starting a slow taper method at that point, and when I got to 8 I tapered by half a mg at a time, cutting either a 1 mg or a 5 mg tablet to achieve appropriate half mg steps. Coated tablets not available to me so that wasn't an issue as coated can't be cut. Also slowed my taper speed. The lower the slower!

[Hope_full in reply to HeronNS]

I requested to my rheumatologist that I start tapering at 1. Thank you!