Flare caused by stress and overexertion

[larkthebark]

hello all,

I was diagnosed with PMR in April 2020 and spent 3 years on steroids.

Using lots of advice from this site I have been off steroids and pain free for just over a year.

My exercise tolerance was back to normal and long walks , even uphill were not a problem.

Unfortunately the last few weeks have been very busy with visitors, and I did more walking than usual, on top off lots of cooking etc.

Pain in the tops of my legs ,lower buttocks, and calves started a week ago and has worsened with some stiffness in my shoulders and arms.

The pain is almost identical to the start of PMR in 2020 with associated feeling tired and loss of appetite.

GP has been very understanding and bloods sent of for screening.

Has advised 10 mgs a day for 8 weeks but I feel that might be a bit too much.

The first dose has helped , but if the pain improves rapidly my thought was to reduce quicker than that.

Any thoughts or comments about flares after a year off pred would be welcome.

Obviously i have designated more chores to my guests and am resting more between shorter excursions. !!!!!!!!!

[Jayveedee]

Like you I’ve had a couple of ‘flares’ since coming off steroids. My understanding doctor prescribed 20mg a day for a week and that worked for me. As it was only for a week there was no need to taper. Good luck! 😀

[larkthebark in reply to Jayveedee]

good morning. that is very useful to know, thankyou for your response

[DorsetLady PMRGCAuk volunteer]

10mg for 8 weeks is a bit OTT… it means you will have to taper quite slowly at the end of that period.

How about 10mg for 2 weeks, see how you are - you could drop to 5mg then re-evaluate. Hopefully by then you will have results back.

You might find you do need to stay on 5mg for a bit longer if PMR is back with a-vengeance , but at least it won’t be so much of an issue to taper from there.

[larkthebark in reply to DorsetLady]

thank you Dorset lady.

Thats about the regime i thought more appropriate.

Going to be seeing GP week after next on our return from Pembrokeshire so will probably suggest this provided symptoms are under control.

[larkthebark in reply to DorsetLady]

good morning Dorset Lady .

I did exactly what you said and actually tapered down rapidly as the pain resolved after a week on 10mgs.

By week three I was on 2.5 so stopped taking pred on the fourth week.

My CRP was zero apparently and whilst that doesnt rule out a flare I felt the pain was under control and I had cut down on my exercise to allow my body a chance to recover.

My GP was not pleased and said i should have taken steroids for at least 3 months and tapered more slowly but as you said a quick taper is possible if its a flare that's brought under control quickly. Especially as I have been off steroids for a year.

[PMRpro Ambassador in reply to larkthebark]

Only relatively - you can drop quickly to just above the dose at which you flared. But when you develop symptoms that developed after you have been off pred for some time you have to do it in the context of how long you had been off. Up to 6 months after getting off pred then it is a sign that the underlying disease was not entirely dormant but at a very low level and it took time for the dripping tap of inflammation to fill the bucket and overflow. When it took a year then that is far more likely to be a renewed episode of PMR and you have no idea how active the disease is. The pred cures nothing, it is a management strategy to combat the inflammation that is created on a daily basis - like dusting removes todays dust but it always returns. And in PMR that is active, it clears out the inflammation that has built up to today - but tomorrow there will be a bit more. A low pred dose will keep it under control, no pred will let it build up again.

[DorsetLady PMRGCAuk volunteer in reply to larkthebark]

Actually I did say re-evaluate after a couple of weeks -and then maybe a lower dose for longer…and as PMRpro has said you may find inflammation creeps up again.

[larkthebark in reply to DorsetLady]

Ok, I take on board all you have said . Will go back to low dose if I get any signs of pain. Its a shame that the CRP is an unreliable indicator in some cases.

[larkthebark in reply to DorsetLady]

And just to complicate things I now have COVID

[DorsetLady PMRGCAuk volunteer in reply to larkthebark]

As we say CRP can be afffected by many things… so symptoms are the key. Sorry to hear about Covid…

[PMRpro Ambassador]

It is difficult to say - if it had been sooner then I'd have suggest the PMR had never really gone, it was just really low activity. But PMR can and does recur and most people I know who have had it twice say the two episodes were totally different,

If the 10mg does the job in a week or two, I might be inclined to drop to 5mg and see if that is still enough. If not, you can go back up, if the 5mg still does the job, you are saved a lot of pred.

[larkthebark in reply to PMRpro]

If the crp is negative am I right in saying that doesnt rule out a flare ? Thanks for advice on Pred.

[PMRpro Ambassador in reply to larkthebark]

Negative isn't the word I'd use - there is a normal range so there should be some! But my CRP and ESR never rose out of normal range even during a really bad flare of symptoms when I could hardly move - the ESR was bumbling along at 16-18, well in normal range, but MY personal normal ESR is 4. It was raised, but no-one was bothered. Same applies with CRP - only ever high once and that was a day I was having arrythmia problems!

[Fatsiajaponica in reply to PMRpro]

I apparently have all the classic signs/presentation of PMR my ESR and CRP are only slightly raised. My rheumatologist, seen for the first time yesterday is very reluctant to prescribe steroids with those blood results. I have a review in 6 weeks and 2 further sets of bloods which may or may not show high levels. I understand her reluctance and she saw how crest fallen I was so gave me cortisone in both shoulders to give me some relief in the meantime. She is waiting to see if this is caused by something else or RA in the making. She is anxious not to misdiagnose as she has seen numerous patients who have been wrongly diagnosed in primary care and given steroids immediately on presentation alone then suffer coming off after years.

Bizarrely I am having the best day since this thing started 6-8 weeks ago, feel almost normal and can get in and out of bed with little discomfort. This is a very bizarre as the cortisone is only for the shoulders and shouldn't be working for a week! Any ideas?

[PMRpro Ambassador in reply to Fatsiajaponica]

It is not uncommon for a steroid injection for something else to ease symptoms beside the target - and PMR is diagnosed as a result.

She is right to suspect other things are possible - but a classic presentation and even slightly raised ESR/CRP should be a red flag. She doesn't really know how much the markers are raised. Mine were about 16-18 for weeks during a major flare when I could hardly move, firmly within normal range - but that normal range isn't what is acceptable for a single person, it is the range that covers 95% of a very large population, My own personal ESR is low single figures - 16 was pretty raised for me.

[Fatsiajaponica in reply to PMRpro]

Thank you

[Crusty1949]

Don’t overthink it, do what ‘your body tells you. I was on prednisone for three years, with multiple flares as I tapered. Whenever I would spin up my wife would remind me, relax and listen to what your body is telling you. Every episode was different but the end result was the same. I have now been at 0 with no flares for two years. Stress plays a big part in how it goes. Relax and smell the daises.