Does PMR go away

[innasway]

Does PMR go away? My new rheumatologist told me that it only lasts for 1-2 years. Thank you

[DorsetLady PMRGCAuk volunteer]

For the vast majority of people PMR does go into remission.. plus for at least half of patients it lasts a lot longer than 1-2 years.

See this - and maybe pass on the information to your new Rheumy 😊

pmrgca.org.uk/pmr-myth-bust...

[Naim1 in reply to DorsetLady]

Thanks for the link 🙏

Will use this and give to my Occ Health unit at the appropriate time.

I honestly believe, looking back ( symptoms & signs) the onset of PMR began 3 years ago and complete break down with it last October.

7 days ago, tried a 1% reduction in Pred (from 10mg)...last two days it has flared up...pain in neck ( well, my wife says i've always bee that!)...shoulders, between shoulder blades and sides. I could not get out of bed properly / easily today.Had to roll out.

So, back up to 10mg I go.

😩

[DorsetLady PMRGCAuk volunteer in reply to Naim1]

That’s rubbish -so maybe in future once back on track only 0.5mg a time and a slower tapering we always witter on about (for good reasons actually!)

[Naim1 in reply to DorsetLady]

Indeed 🙏...will do that.

🤞🤞

Thanks.

[PMRpro Ambassador]

It does go away for probably 95% of patients - however, depending on the study you read the 1-2 year figure is a triumph of hope over experience! About 1 in 5 get off pred in a year, by 2 years probably 1 in 3 are off pred. Half of patients take more than 6 years. And for a few of us it can last for life.

There was an early paper that quoted the mean duration of pred at 23.7 months.

"The median duration of therapy was 37.3 months. It was estimated that 40 percent of patients will require therapy longer than four years. Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. The data support the concept of two patient populations--one with limited disease and another requiring long-term therapy."

pubmed.ncbi.nlm.nih.gov/403....

31 patients in this study was under half and it wasn't a big study anyway. But I am pretty sure this is where the 2 years figure derived from -

[Rimmy in reply to PMRpro]

Yes I am finally realising I am in the not so fortunate category of 6 years plus - as it is even longer now for me . For the most of our southern hemisphere winter I have been in a 'flare' mostly with the PMR aspects of my PMR/GCA - all the old 'fun' stuff of sore neck/shoulders and sometimes lower half - but the worst thing is the resurging debilitating fatigue. I have been stubborn about raising my Pred dose above the 8.5mg 'low' that it has taken me years to reach - although I now also take 10mg a week of Methotrexate as well. I am wishfully just hoping it retreats in our Summer again but at heart I know this is not a 'seasonal disease'.

[PMRpro Ambassador in reply to Rimmy]

I think it can be a bit - weather affects me badly.

[PRL1957 in reply to PMRpro]

Hi, PMRpro - and anyone else following this thread,

That paper (Ayoub et al, 1985) might be where the myth of 1-2 years originates, which would reflect a poor misreading by those who subscribe to that myth. As you noted, those authors suggested that of the 75 patients selected for that study (and some of the selection criteria were questionable) 40% will require corticosteroid therapy longer than 4 years.

In that study, the selection criteria included age above 50 years and ESR raised above 40 mm/hr, which do not hold in all cases. Also, and any patients who showed signs of temporal arteritis were excluded.

An earlier paper (Ian Gordon, Quart. J. Med. New Series 116, 473-489, 1960) suggested a duration of 2-4 years, with an average of 33 months. Although the condition has been recognised medically since the late 19th century (Bruce BMJ, 2, 811, 1888), part of the problem in establishing its ætiology and duration was inconsistent nomenclature.

Here, I am glad that the term Polymyalgia Rheumatica is used now. In addition to all the other tribulations associated with PMR, knowing I had 'Senile Rheumatic Gout' (the term suggested by Bruce) would be one step too far!

[PMRpro Ambassador in reply to PRL1957]

Well yes - it is clear it is rather more than a simple hiccup illness so anyone who doesn't pick that up must have been asleep and it is the reader at fault not the paper. They seem to have excluded the entire "difficult" cohort because low markers are often found in the really longtermers. Our experience is that GCA patients get through more easily than PMR-ers although GCA-ers who exhibit PMR symptoms late on can be stuck for a while.

However - bear in mind that Bruce's patients were all male ...

[Rimmy in reply to PMRpro]

Yes I am I think one of those GCA-ers who appears to be stuck !!

[DorsetLady PMRGCAuk volunteer in reply to PRL1957]

Agree with PMRpro as an ex GCAer only, once diagnosed it very often is an easier ride. PMR seemingly easier for males (generally, before those having a hard time disagree).

[innasway in reply to PMRpro]

Thank you

[tangocharlie]

Is your 'new rheumie' an old git who has never actually seen a case of PMR or a newbie who has never actually seen a case? Either way get a rheumatolgist who knows what they doing or advise the current one to read the PMR guidelines or join the PMRGCAuk charity. For most people it does go away but he average is something like just under 6 years.

[innasway in reply to tangocharlie]

Thank you

[piglette]

Sounds like your rheumatologist has read some article and knows very little about PMR.

[innasway in reply to piglette]

Thank you

[tangocharlie]

Seriously, as Dorsetlady says, have a look at resources, maybe ring the free Helpline, and next time you see him/her take along some leaflets, say you've spoken to people at the charity and it seems our knowledge of this illness is advancing. Our biggest battle is still trying to educate some of the people who are supposed to be treating us. Not all , there are some enlightened ones, but we still have a long way to go. Healthprofessionals can become a member of hte charity for free and for everyone is it's a measly £15 a year and every penny helps

[innasway in reply to tangocharlie]

Thank you

[RedRum1968]

I developed PMR at 55 in April 2023. I came off prednisone (tapered slowly) a week ago. No flares along the way and I’m doing good so far. I’m keeping everything crossed I’m in remission.

[innasway in reply to RedRum1968]

Thank you

[Sweetpeasoprano]

I was diagnosed with PMR in August 2021. I started on 15 mg and using advice from this forum gradually reduced until stopping earlier this year. So far so good. As PMR Pro and DL say, some do get there, but don’t rush it.

[innasway in reply to Sweetpeasoprano]

Thank you

[PMRnewbie2017]

Well as my code name says i was diagnosed in 2017 and am still here! TBH I'm at 2.5mg again. Had several excursions to low doses...even down to 1mg but it never lasted. I suffered the consequences of ignoring symptoms and suffered the consequences of under dosing rather than flaring. Currently I feel really good and perhaps my disease activity is quiet but only time will tell. Plus as a long termer, i still need to get to zero and my adrenals will control that aspect of being steroid free.I wish Rheumatologists would grasp the bigger picture.

[innasway in reply to PMRnewbie2017]

Thank you

[Exflex]

if only! I was on Pred for 4yrs.