Polymyalgia rheumatica: observations of disease evolution without corticosteroid treatment

[Admiral06]

This recently published study contends that the widespread use of corticosteroids early on in the course of PMR has prevented researchers from seeing the natural evolution of the disease. In fact this researcher found that in 73/95 patients (77%), a definitive diagnosis of RA could be made on average 8.5 months from PMR disease onset and "true PMR" was infrequent in the absence of GCA.

Moreover, when 68 of the RA patients (originally diagnosed with PMR) where treated with the anti-rheumatic medicine Hydroxychloroquine (HCQ) 58/68 (85%) responded dramatically. For these 58, an average interval of 13.5 months elapsed from disease onset to remission, which is far shorter than the 24-month expectation for PMR to spontaneously abate.

I assume this suggests there may be 2 different forms of PMR, or alternately 2 different forms of seronegative RA

Just when we thought we had heard it all……………

ncbi.nlm.nih.gov/pmc/articl...

[piglette]

Thank goodness I wasn't part of that bit of research.

[Admiral06 in reply to piglette]

I couldn't agree with you more; especially Phase 1 which was treated solely with Nsaids. ARRRGGGGHHH!

[kulina in reply to piglette]

I would have never made it!

[HeronNS]

Would they suggest, then, that the initial treatment be with NSAIDS (hopefully only for few days) followed by HCQ as first line treatment instead of pred?

[Admiral06]

I found reference to HCQ being used in combination with Pred for RA. I also found a PMR study which added HCQ to Pred to help with tapering. It's possible a combination therapy might shorten the time to remission and simultaneously reduce steroid use.

[PMRpro Ambassador]

It is thought by some experts that there are at least 3 different versions of PMR plus a reactive sort of PMR that happens in response to an infection and then resolves very quickly once the infection is dealt with. The 3 versions seem to be relatively short-lived, up to 2 years (about 25%), a medium term version of up to 4 to 6 years (about half) and the other 25% have it longer, even for life. Certainly fits with what i have observed on the various forums in the last 8 years.

Two years or so ago when the consultations for the latest recommendations for the management of PMR were ongoing, there were no good studies suggesting plaquenil/hydroxychloroquine was of any value as a steroid-sparer, just a single poor one that found no benefit.

I'm not convinced by this paper - don't know why!

[Admiral06 in reply to PMRpro]

This study seems interesting, but I would have to see the entire study to better understand the conclusion. blackwellpublishing.com/acr...

[PMRpro Ambassador in reply to Admiral06]

It's from the Pisa group I think - but 6 years ago.

It isn't a study as such - it is a retrospective meta-analysis of patients over a long period. They are filled with pit-falls and can't be compared with a proper controlled study. It certainly wasn't considered strong enough evidence for the most recent guidelines to suggest the trial of hydroxychloroquine in PMR.

[PMRpro Ambassador in reply to Admiral06]

And as a footnote, I sent the link for the "no corticosteroids" paper to one of the top PMR research rheumies in the UK and asked her opinion of it, saying "Something seems not right but maybe I'm just of a suspicious nature."

Her reply was: "Your instincts are, as usual, spot on."

No further comment - but she is a busy lady!

[kulina in reply to PMRpro]

PMRpro, what you are saying sounds very interesting. Do you have a link to the description of the different versions of PMR? If there is such a thing...

[PMRpro Ambassador in reply to kulina]

No, sorry - just part of discussions with various rheumies and reading a load of papers. The original paper I read with the 25/50/25% distribution has disappeared behind a paywall I suspect and I can't find it again having lost the reference.

[Celtic PMRGCAuk volunteer]

Well all I can say is that my PMR arrived suddenly and violently with the pain rendering me totally immobile and bed bound for several months with GPs and a rheumatologist failing to come up with a diagnosis. I was taken to appointments by ambulance and wheelchair and took Ibuprofen and Paracetamol with little effect. As for the researchers of this study considering that "corticosteroids prevent them "seeing the natural evolution of this disease", I wish they had spoken to me - my untreated PMR evolved into GCA!

[PMRpro Ambassador in reply to Celtic]

They could have asked me about natural evolution of PMR too! It doesn't go away soon and messes up life good and proper! And NSAIDs don't help - except to potentially develop some very nasty sideffects. Remember meggies who ended up in A&E with a gastric bleed after 3 doses?

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Yes, I do remember meggies' horrid experience with a NSAID. Not to mention poor Betty's experience with paracetamol. We've obviously been around too long!!!

[PMRpro Ambassador in reply to Celtic]

I think I'd qualify that to "been around PMR/GCA too long" ...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Te-he, of course!

[SusanEleven in reply to Celtic]

My pmr came on within the space of weeks and I knew something was odd because neither ibuprofen nor Tylenol did anything reduce the pain.

I surely would never be a volunteer subject for the "natural evolution" of the disease. I could not walk without a cane, sleep more than a few hours or dress myself!

[Admiral06]

It's not for me either Celtic as I well remember the pain. Unfortunately, without research we would never get ahead. If you read the details of the study, you will also see that 13 patients reported headaches. Of these, 11 of these underwent Temporal Artery Biopsy and 4 were found to be positive. All were immediately removed from the trial.

[Celtic PMRGCAuk volunteer in reply to Admiral06]

I agree, Admiral - research is vital. Somewhat concerning though that they relied on the TAB for confirmation of GCA just removing 4 of the 13 who complained of head pain because those 4 tested positive. We all know that TAB can be unreliable as the large cells they are looking for can escape the tiny portion of artery removed. With just NSAIDs being used, it was taking a chance with the remaining patients complaining of head pain that it wasn't GCA affecting the temporal artery.

[PMRpro Ambassador in reply to Celtic]

The "Journal" in which this was published is what is called open-access. There have been some dubious practices by the publishing house named here.

sciencemag.org/news/2013/11...

The expert I asked agreed with me - I wouldn't give the article any credence.

[Admiral06 in reply to PMRpro]

What is interesting to me is that PubMed Central at the U.S. National Institutes of Health's National Library of Medicine indexed this paper and it was subsequently published by the National Center for Biotechnology Information (NCBI). It turns out PubMed accepted Dove Medical Press as a participating publisher and indexed 42 of their papers.

I have always accepted NCBI documents to be of the highest quality, but it would appear this may not be so.

[PMRpro Ambassador in reply to Admiral06]

Indexing is one thing. Whether the thing indexed is good or not is another.

[bunnymom]

I am currently trying this medicine as a steroid sparers as I haven't been able to reduce below 12.5. Will keep you posted.

[navejasjoe]

Hi Admiral06,

Once my wife had been on Prednisone (15mg) a couple of weeks, and the inflammation markers showed no more inflammation, her rheumatologist added Plaquenil (400 mg daily) to her intake. Even though he tried to taper her pred too quickly, he said the plaquenil would have to be taken for a very long time. Even now, almost a year later, her GP says she needs to be on this medication. Though not totally symptom-free but feeling a lot better than last year, we are not really sure what is helping more, the pred or the plaquenil.

Joe