PMR 15 Years On

[Pred5]

Has anybody experienced PMR 15 years after first diagnosis. Have tapered properly a few times but always seemed to come back. Have tapered from 10mg of Prednisolone over 18 months and arrived at zero two months ago. Have osteoarthritis of hip and one knee and scheduled for hip procedure. The hip pain arose during taper but continued the reduction of pred. After going below 4 mg muscle pain increased slowly with PMR like symptoms and now it seems like full blown PMR. Shoulder, neck , legs etc. GP says there is no inflammation after blood test and it must be linked to osteoarthritis and does not advise going back on pred. Any ideas??

[123-go]

”Shoulder, neck, legs etc” sounds like PMR to me. Have I read your post correctly that you continued to taper from 4mg to zero even though you were experiencing symptoms?

[Pred5 in reply to 123-go]

Thanks for the reply. Yes I was confusing with osteoarthritis pain 🫢and the symptoms increased very slowly and only became really bad after stopping pred completely.

[PMRpro Ambassador]

You say you have tapered down a few times - how long each time was it before the symptoms reappeared? When symptoms reappear within about 6 months of getting to zero, it is a sign that the PMR is not entirely burned out, it is chugging along at a very low underlying disease activity and it takes time for the inflammation to build up to a level that causes symptoms. The markers may be "in normal range" either because your normal is low and it has risen some already but not out of range or because there is not enough inflammation present for long enough to trigger the liver to produce the proteins that cause the markers to rise. Symptoms ALWAYS trump lab results. You should never consider you are tapering relentlessly to zero - you are titrating the dose to find the lowest effective dose. I'd say you passed yours at about 4mg if that is when symptoms started increasing.

I have had PMR for 18 years altogether - and I have never been able to taper to zero before there has been another increase in disease activity and a flare.

[Pred5 in reply to PMRpro]

Always felt under pressure to stop steroids and got myself confused with arthritis pain emanating from knees and hips. Now that you have told me about your 18 years I will ask GP to reinstate my prescription. Thank you very much indeed🙏

[PMRpro Ambassador in reply to Pred5]

I often wonder if they realise that pressuring a patient to stop steroids and so cause a flare actually worsens the situation. The more you allow flares to develop, the harder it becomes to taper the dose again.

That PMR lasts so long is little known by the average GP without personal experience - which feels like most. It is only a small proportion who have it for so long but it seems to be increasing - there are quite a few on the forum at well over 10 years. It is clear that there are several versions of PMR - far from only a shortlived, over in 2 years benign complaint as so many believe.

[Mayadill in reply to PMRpro]

'over in 2 years' . Really not wholly the GP's fault

What does a diligent and concerned GP who recognizes s/he doesn't know very much do, s/he looks up NICE and the BSR,

BSR: 'usually 1-2 years of treatment is needed'

NICE: 'typically treatment is required for between 1-2 years'

[PMRpro Ambassador in reply to Mayadill]

Oh, we know, NICE is far from nice!! It is one of the things the charity bangs on about ...

[Pred5 in reply to PMRpro]

Thanks

[Purplecrow]

PMR first diagnosed in 2013. Been down to 2 mg. Pred a few times, but ultimately needed to return to 6-7 mg range. Covid did not help… the vaccine injections always stirred PMR up again. Currently I’m at 5 mg. Hoping I can slide further down on the pred, but time will tell.

[Pred5 in reply to Purplecrow]

Thanks for your reply