PMR Life changing in so many ways

In early December 2020 I was suddenly immobilized by chronic left/right shoulder,hips and hands pain.My hands felt swollen and hot the rest of me felt like death warmed up.

A quick search of Doctor Google came up with this insidious PMR as a suspected reason.Having had a TLIF procedure on L5S1 in 2015 and a heart attack in September 2018 I had kind of figured I wasn't the the 30 year old I might have once considered I was,but in reality a 64 year old man past my prime ,but gosh nothing prepared me for this sudden loss of abilities.

My local GP had my blood tested and there was nothing really dramatic to be seen but she started me on the Prednisone and suddenly almost overnight I was totally free of all pain 24/7.Amazing!

From memory the starting dose was 20mg and after two weeks the GP started tapering by 1mg per 3 weeks/month.At first all was good and I thought this would be a walk in the park but then after a while the pain started to creep back in.it must have been insignificant at first as it was only in the early morning coming good after breakfast dosage.Having had Osteoarthritis for many years and being on extended release Osteo-panadol morning and evening (I can't take anti-inflammatorys because of the coronary artery disease)

I can't remember what I got down to but last month the morning pain was so bad I pushed it back up to 10mg.

At this point according to the GPs tapering schedule I should be at 5mg but am now on 8mg and the pain in the morning right through till 11am ish is horrible.Even sitting on the toilet seat is painful and standing up from kneeling or sitting is a logistical nightmare.

Putting on a jumper really dials up the pain.

GP has requested another blood test and is seriously considering sending me off to rheumatologist depending on results.Being in a country area this will mean a three hour return trip sometime in the next four months such is the general waiting lists for specialists in my neck of the woods.So I'm not really keen on that idea reading on here how they like to push extra drugs to try.

So what's the future,I'm confused,should I just be gritting my teeth and keep tapering in the hope the PMR goes away by itself after twelve months+and in the meantime living with the chronic pain till whatever time of day it decides to relent?

[PMRpro Ambassador]

Did your doctor suggest that PMR goes away in a year or so? Because it definitely isn't the case! Only 1 in 5 is off pred in a year, it rises to 1 in 3 by 2 years but half of us need pred at some dose beyond 6 years.

practicalpainmanagement.com...

is an article about work done at the Mayo in Rochester. The link to the source study is at the bottom of the article and the various timescales are in that - they were also quoted in another article which is no longer available unfortunately.

You cannot reduce to a fixed timetable - PMR varies from person to person and the dose required also varies for other reasons too. You are never reducing relentlessly to zero, you ae titrating the dose to find the lowest effective dose for YOU. At present that appears to be about 10mg - and if you were to use the taper approach in this article from an experienced group in Bristol UK, and still used by the author, Vaness Quick at the Luton and Dunstable Hospital UK, you will see you would currently be at 10mg for a year - until well after Christmas. I'm sure the reason they find it reduces flares from 3 in 5 to 1 in 5 is because that 10mg dose covers the first 15 months when disease activity is at its highest and so causing more symptoms.

There is no point being on an inadequate dose of pred, the dripping tap of left-over inflammation will fill the bucket until it overflows and you are back where you started. Your GP can deal with this - what is happening to you is absolutely typical of inadequately managed PMR.

[Hidden in reply to PMRpro]

I'm thinking,if the the pain was prominent at 10mg would it not be better to go up to 15mg and see if I become pain free then taper back slowly towards 10mg? I put this to the GP when I saw her last on the 5th July but she seemed more concerned with getting CRP, ESR, EUC, FBE and LFT blood testing done.I have not seen her again as she is on holidays.

[PMRpro Ambassador in reply to Hidden]

Yes - I was assuming from what you had written you were OK at 10mg. If not, you need to start over again.

[DorsetLady PMRGCAuk volunteer]

Hi,

You maybe should have a read of this - hopefully a realistic view of your illness, treatment etc -

healthunlocked.com/pmrgcauk...

My late husband had coronary issues, and I had GCA (PMR’s bigger and nastier big sister/brother ) for 6 years - and I know what I’d rather have…..

You need to ‘accept’ this new illness, and like your heart and arthritic conditions learn to live with it and more importantly, manage it.

Have a look at the FAQs - linked below, but come back as often as you like/need/want to ask specific questions.

healthunlocked.com/pmrgcauk...

You will get through this - and it will go in time…but in its own time, so managing it is very important for your quality of life.

[Hidden]

So ,last Wednesday morning after having my blood tests I increased the Pred back to 15mg and almost immediately things got better.I felt like the proverbial new man.Next morning no laying in bed dreading having to roll over and swing the legs out of bed,I shot out, then touching myself in all the usual joints to see if there was any pain or stiffness,result virtually none.It's now Sunday five days after the increase and I feel as if I could climb into the ceiling or even a small mountain.My moods are better,my whole body is running smother.

Ok where to from here,do I ignore the GP as far as her tapering schedule goes >down 1mg every three to four weeks and instead wait three weeks and drop by 5% or 10% ?

At some stage I'm going to run out of 5mg tablets and it will mean another repeat script.

[PMRpro Ambassador in reply to Hidden]

1mg every 4 weeks or so should be OK, especially using a slowed taper. You need to make it clear to the GP that you need to start again and take notice of any returning symptoms as you get lower. You obviously were at too low a dose - but do you know where it went wrong? That is the crux - you can't just plough on reducing regardless of return of symptoms. Some people need more in the first few months - were your ESR and CRP raised prior to diagnosis? If so, they need to be falling and preferably at low levels BEFORE you reduce and then kept a close eye on , bearing in mind that blood tests often lag behind symptoms so symptoms rule. And YOU have to do your bit, you must avoid overdoing things if you want to reduce the dose comfortably. If you want to restart activity you must go about it SLOWLY, building up in very small steps and not expecting to get back to 100%. Most people say they manage maybe 70% of previous activity levels.

And you will need a LOT of repeat scripts - PMR lasts a couple of years at least for most people, much longer for some. Only 1 in 3 is off pred in 2 years.

[Wales20]

Hi grime

I'm on holiday at the moment so not kept up with my emails. I am a 62 year old man in previously good health who wasdiagnosedwith PMR two years ago, with similar symptoms to yours, with debilitating pain in my hips/upper legs and shoulders / neck. I was initially given a shot of 120mg of Prednisolone, which within 24 hours had very greatly reduced my symptoms, which returned gradually over the next several weeks, when I was started on 15mg daily of Prednisolone. I have gradually tapered from then with a couple of flares, with mostly manageable symptoms. After my last flare in February, which did set me back, my rheumy started me on 15mg weekly of Methotrexate, to help me to taper off the Prednisolone 1mg each month, which has been manageable. I am now on 2mg Prednisolone daily. Since February I have also been diagnosed with osteoarthritis, which particularly causes me pain when sitting down, and getting up from sitting, and osteoporosis, which is attributed to the Prednisolone use. I hope to have annual infusions soon to help improve my very low bone density, and to be off the Prednisolone by September, when I am due an operation on my anal fistula ( cause Unknown, but it began several months after starting on the steroid). So, after two years I hope my PMR at least may be fading - my inflammatory markers are more or less within normal ranges - but it is hard to differentiate between PMR pain and osteoarthritis pain. My rheumy expects me to be on the methotrexate for 3-5 years. Drinking very little alcohol has been hard for me, but my stomach has coped with the methotrexate, though I do get more easily queasy. I worry I may have a setback though after my forthcoming operation.

It has been shocking to have all this pain and diagnoses and it has taken me time to accept my circumstances and really focus on trying to recover. I've retired from my stressful job nearly a year ago, do lots of walking and a daily Pilates based exercise routine and have changed my diet, trying not to eat gluten and dairy in particular, though I struggle to not eat any cheese. I think this has all helped.

I hope you find reading this experience helpful. It took me a long time to really come to terms with these difficulties.

Best wishes for your recovery, but don't set yourself to expect a full recovery too quickly.

Rick

[Hidden]

Gosh Rick ,you have had a bad run.Hopefully the tide is turning for you.I guess a daily tab of calcium wouldn't hurt to ward off the osteoporosis.

[HeronNS]

Considering you have only been diagnosed since late last year, you did very well. It's a pity your doctor was not more aware of the need to slow down the taper after the initial successful stages. Now that you have more information you should be able to keep on top of things better and avoid another flare. As PMRpro said long ago, and I keep repeating, "It isn't slow if it works". There's always someone here to answer questions or offer a commiserating shoulder. Good luck!