8years PMR this week

[9lives]

hi

Thought I would share my 8year journey with you all.

Sorry it’s a bit long x

It was the day before my visit to the Chelsea show 2016 that I was diagnosed with PMR I was wondering how I would walk around all day. After taking my first 20mg of prednisone the day before, that my GP prescribed I woke up on the day and thought a miracle had happened. I could actually get out of bed and walk all though a little stiff I had the most wonderful day at Chelsea flower show. Fast forward to this week and after many an up and down and various odd symptoms I attended the Chelsea flower show again this week, it was a surprise from OH. And we had 2days with hospitality included. I was thinking how much healthier and mobile I am in comparison with 8 years ago. I’m on 1.5 mg now and reducing using the DSNS which seems to work well for me now. I almost feel that the PMR has disappeared as , I feel fine, and surprise myself at what I can do.

We’ve taken long haul holidays most years and I find as long as i pace myself it’s fine.

But I still take things easy and say no to things if I have to.

I never gave up running my boarding Cattery but I did get extra help in when needed.

I just wanted to say that there is some hope even for those of us on the long haul journey of PMR . There is light at the end of the tunnel. It’s just we don’t know how long the tunnel is xxx

Hope you all enjoying the bank holiday

Carole

[yogabonnie]

I love this!!! as I just passed 7.5. years. and am on 2.5mg. WAS down to 1.5 and flared so my only advice is TAKE IT EASY!!! and enjoy how good you feel! thank you for sharing!! Bravo!

[DorsetLady PMRGCAuk volunteer]

Good to hear -let’s hope you can visit CFS next year with no PMR ! 🌸

[PMRpro Ambassador]

Thank you - there are plenty out there with positive stories but they are so rarely shared. And it isn't at all long!!!

[SheffieldJane]

I am on 5 mgs after 8 years with some ups and downs. A bad bout of Covid caught on a long haul flight in February, has slapped me flat. Another complaint that does not elicit much sympathy. I was all set to get down to 3 mgs and then have my Adrenal function checked out again. I fear that my Endocrinologist will be irritated. I have not done a proper sick day rules recently in spite of feeling like I still have Covid and move stiffly and painfully. I envy your progress.x. My diverticular disease is holding me back too. I found more OTC meds in France for vomiting and nausea and right side Lower abdominal pain. Not sure if each flare needs a double dose. Very stuck!

[Louisa1840 in reply to SheffieldJane]

I am so sorry to hear of your challenges, Jane. Covid has beocme so commonplace it elicits little more sympathy than the common cold but I do feel it has enormous ramifications for some people.

Your presence and invaluable experience and advice on this site are SO appreciated! I feel the stiffness (which I have too) may be something more than PMR? I was diagnosed with PMR 7 years ago. I have been very stiff since my early 50's (now 74). A rheumy, that I once saw, thought that I may have inlammatory arthritis underlying the PMR? I am waiting for some cannabinoid gummies to arrive in the hope they may help the awful stiffness. I will let you know.......

I seem to remember you have rellies in Oz? I live in Tasmania though I was born near York.

[PMRpro Ambassador in reply to Louisa1840]

It is now being accepted that one form of PMR has peripheral arthritis as part of it. Mine seems to - and it is a longer lasting presentation.

[Louisa1840 in reply to PMRpro]

That's very interesting Pro. Could you direct me to any papers on that?

[PMRpro Ambassador in reply to Louisa1840]

It was in the meeting last Friday!! It has been mentioned occasionally for a long time but most doctors just don't register. It isn't part of diagnostic criteria other than that synovitis is part of PMR. I suppose the question is whether the arthritis is part of the PMR or does it occur alongside some patients, developing over time or does the PMR "morph" into an inflammatory arthritis - or the obvious answer is that the inflammatory arthritis had a polymyalgic presentation originally. This is where PMR becomes really complicated rather than it all being something with clearly delineated cut-off points.

[Louisa1840 in reply to PMRpro]

Yes, Pro, I totally agree with your last sentence! It seems to me it is a highly individualistic condition under a very broad umbrella. Add to that each individual's response and you haven't got something easily defined or that can be packaged into neat little boxes.....

[PMRpro Ambassador in reply to Louisa1840]

What surprises me is that since it was blaringly obvious to me nearly 15 years ago - how come it has taken rheumatologists so long to cotton on? Dasgupta admitted last Friday that rheumies, in the UK at least, had dismissed it into primary practice years ago and that has led to the mess they are now in. I suspect though that it isn't as bad in other European non-English-speaking countries . Certainly that is my experience.

[Louisa1840 in reply to PMRpro]

Which begs the question, are primary practioners equipped to treat such a complex condition?

[PMRpro Ambassador in reply to Louisa1840]

Well they aren't equipped to diagnose it and differentiate from other potential causes of the symptoms and it is is claimed by some experts that a third of GP-made diagnoses are incorrect, But even rheumies often don't get it right and all too often will say "not PMR" because the patient doesn't tick their boxes, I have heard SO many say "atypical PMR" when actually it fits our experience very well and by the time you take out the atypicals, they represent the majority! Plus this insistence from some self-styled experts that PMR lasts 2 years blah blah really doesn't sit well with this new dawning realisation we heard last Friday from some real experts. GPs at least are often willing to acknowledge that PMR isn't easy and can last a long time.

[Louisa1840 in reply to PMRpro]

I'll never forget the rheumie who announced , before I had even sat down, "Well you haven't got PMR that only lasts 2 years!". I should have RUN there and then. I wonder if there would be a summary /paper published on the meeting last Friday; at last it sounds as though they're talking some sense?

[PMRpro Ambassador in reply to Louisa1840]

I doubt there will be a publication - but it is likely to form the basis of future directioning of work. Yes - someone to bodyswerve there if you have PMR!

[9lives in reply to Louisa1840]

When I was diagnosed in May 2016 my GP said I will put you on prednisone, it will be for about 18 months !! 😂😂 8 years on and she has been educated by me xx thanks to this site 🙏🏻

[SheffieldJane in reply to Louisa1840]

Thank you Louisa1840. The plan is to join my daughters, husbands and 4 grandchildren in Sawtell NSW permanently, when my husband retires and the paperwork is done. I would be grateful to get my pre-Covid state of health back again. Australia seems to suit me in many ways. X

[Louisa1840 in reply to SheffieldJane]

Oh, that's wonderful news, Jane! I am sure the warmer, drier climate helps our condition. I know that when I have been back to England all my joints seem to swell up and become a lot worse and that was before PMR as I haven't been back for 12 years. Our lovely rellies come to us! Hang in there....

[Louisa1840 in reply to SheffieldJane]

I've just looked up Sawtell, Jane and I see it is south of Coffs Harbour. It should have a perfect climate. If ever you make it down to Tasmania, we run a holiday cottage so bear that in mind.......

[9lives in reply to SheffieldJane]

Aww sorry to hear about your set backs and the rest. It’s not easy sometimes, this is not a straightforward illness, is it ? and I find people just don’t seem to understand sometimes x and it doesn’t take much to throw it out of kilter. It was not easy for me in the first few years when PMR was at its worst, but things have settled down now so making the most of it xx hope things improve for you soon. Take care x

[random901]

Thanks for this, 9lives. I need a boost atm. Have just dropped from 20mg to 15, and the difference is appreciable after 3 days. Driving campervan through rain some 40 miles for a break, nevertheless - I shall take my aches & pains elsewhere! All the best!

[PMRpro Ambassador in reply to random901]

That was a 25% decrease. Experts say never more than 10% change in dose - but at this stage 2.5mg steps are usually doable.

[random901 in reply to PMRpro]

It was too big a drop! Aches and pains quite severe, and have continued unabated for 8 days. More than a temporary reaction to the change, I think. Back to 20mg today, then might try 17.5. How many days do you think I should be on 20 before attempting this slower taper, please?

[PMRpro Ambassador in reply to random901]

Until you feel OK? A few days should do it, And what about starting one of our slowed tapers too? Introduce the new dose more gently.

[DorsetLady PMRGCAuk volunteer in reply to random901]

Ditto to PMRpro’s reply -and maybe next time don’t reduce just before a camper van adventure…

[Janet57]

Thank you for posting your story. I was diagnosed in 2013 so it’s been a long haul with ups and downs but I’m now at 3mg and doing fine even after a full knee replacement (ouch!). During my time with PMR I’ve managed holidays, even bucket list trips to faraway places and by pacing myself I have enjoyed them all. I’m reducing very slowly DSNS but may get to a level and stay there. Rhemy says that’s ok. PMR might be with me for life. That’s ok. I’m not going to let it stop me from enjoying each precious day. Positive stories like yours are lovely to read. 😊

[marionofnorwich]

That is good to know. I am just embarking on year 5 and was just thinking 'am I on a slow decline to immobility and disablement ' so it is good to know that you can come back. My main issue is that immobility is causing weak muscles and it is hard to keep them from slow deterioration

[PMRpro Ambassador in reply to marionofnorwich]

Before Christmas I actually bought a rollator because I was really struggling to get to the village and back carrying a litre of milk! Six months on and it is sitting in my bedroom, unchristened! It can improve but, to be fair, needs a sympathetic and proactive doctor.

[pegpowell]

I was diagnosed with PMR 2016. Had knee and hip replacement, meniscus repair thru the years. Stopped pred this year, Jan. 2024. Unfortunately developed PAD last few years but continue daily walking that improves every day.