Anyone familiar with this study?

[Devedaaee]

...it seems to turn a lot of what we think we know on its head:

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

[Hidden]

I need to read for longer to tease out issues but it doesn't turn it on its head for me. It is interesting to read though.

I have questions about the methodology and how the subjects were chosen both medically, diagnostically and ethically. As yet* I cant address the results.

20/22 that "presented" as PMR were diagnosed with RA and went into remission/ asymptomatic once they were given treatment from Ra rather than nsaids. (????!!!)

*I have to read on a smartphone so it takes longer and is hard to read. It's 50/50 on whether I will be able to read it fully on 3 hours sleep. Probably not the best time to read it. 😂😂😂😴😴😴😴

[Maisie1958 in reply to Hidden]

It is interesting though isn’t it? I think all the participants were against using corticosteroids whereas I couldn’t wait to swollow my first Pred tablets! (Edited-I was so sore and a few days on prescription nsaids hadn’t done anything apart from making me feel sicky) I’m also reading on iPhone (though with more sleep happily 😘) so that doesn’t help-I might print it out -easier to comprehend than on any screen. Also I keep having to edit out my typos.

[Hidden in reply to Maisie1958]

Yes it's one for hard copy. I no longer have any computer or printer access so I do get boggle-eyed and frustrated when trying to read articles.

I dug around in an old cupboard and found a laptop running Windows 95. Unfortunately it took 30mins to load system files. Getting my hammer out later. 📵🔨

[Yellowbluebell in reply to Hidden]

The hammer method of updating computers is my favoured choice as well.

[Hidden in reply to Yellowbluebell]

We are definitely not alone in that either.

[Yellowbluebell in reply to Hidden]

I used to I ask the IT dept whether I could use my hammer and it was amazing how quick they suddenly appeared!!

[Hidden in reply to Yellowbluebell]

😂😂😂

[Hidden in reply to Yellowbluebell]

The problem is that this laptop has all the family history stuff I worked on years ago. I will have to find a usb stick to download it onto as I intend at some point to do copies for all the neices the nephews....whether they want it or not.

[HeronNS in reply to Hidden]

The sooner the better or technology will overtake you and it will be very hard to access those family files. Hard copy recommended!

[PMRpro Ambassador in reply to Yellowbluebell]

Hurts less than booting ...

[Maisie1958]

Really interesting though I’ll have to read it again, probably more than once. Certainly makes you think all stiff and sore old folk shouldn’t be lumped together under one label and regular reviews of diagnosis are important especially if things are changing or not going so well. I’m not surprised that 48 out of the 52 in the first trial declined to continue just with NSAIDS, but did I read correctly that 4 people with GCA were treated with HCQ only initially? No prednisolone until a few months later? Think that’s what it says a fair bit into the results, just before the case study?

I know they were going on clinical signs rather than other tools but I’m not sure how people with overlap of PMR and LVV would fare. Maybe we all need PET scans at the start rather than just ESR/ trial doses of corticosteroids!

Thank you for posting this.

[Soraya_PMR in reply to Maisie1958]

GCA without pred for 3-4 months is more than worrying, I agree with you.

[PMRpro Ambassador in reply to Maisie1958]

Now THAT is more like it - PETs for all ...

[podo]

Very interesting, especially as I've recently started HCQ after 16 years of CS. Will be great to see if I can at last get rid of the CS. Watch this space!

[Maisie1958 in reply to podo]

Yes please let us know how you get on, have reread some of your previous posts-think you deserve some luck after all this time on corticosteroids.

I realise I’ve had an easy time on low dose prednisolone for 4 years. Never have had any actual joint pain at all but get the night sweats etc back if I stop tablets for more than a few weeks.

Hope all goes well for you.

[jinasc]

I am cynical.........so remember that when reading my comment and I may have read it all wrong. Would like to know what certain medics who have been researching both PMR & GCA for 12 years that I have known about...........and are looking for cause and cure and probably some years before I ever came across both.

Done in the USA and 1 person doing it (if I have read it correctly) and only 95 patients.

Interesting to see what take others on here with long term experience some of them in the medical area.

[Soraya_PMR in reply to jinasc]

I’m with you and feel cynical too.

No ethics committee, just one doc. Were they all put on NSAID’s and HCQ, was a choice offered? That all seemed cloudy to me. I’d have to read the USA diagnostic for RA that he referred to.

My belief flew out the window with the male study. Some men do accomplish the 2year self remission. So do some ladies. But men moreso I believe.

What was QOL while on NSAID, no mention of side effects. Lots of holes I think.

[Hidden in reply to Soraya_PMR]

Hence my concerns with methodology etc. It's times like this my phone alone gets me mad. Too small to read anything and do proper critique.

[GOOD_GRIEF in reply to Hidden]

What caught my eye was a reference "anti CCP not available". In the USA? Really?

[Hidden in reply to GOOD_GRIEF]

😂😂😂 oh dear.

[PMRpro Ambassador in reply to Soraya_PMR]

See my comment below ...

[Soraya_PMR]

Hmm, not understanding how those who had RA (supposedly) were treated and then drug free after time but still maintained remission. Maybe I read it wrong?

[GOOD_GRIEF in reply to Soraya_PMR]

No, you read right.

That doesn't happen.

[HeronNS]

I don't know if this is the case, but it's probable this publication was not peer reviewed. It is in Open Access Rheumatology which as far as I know is not a proper academic or professional journal. It is a way for people to get unusual or alternative ideas out there, but by the same token those ideas need to be looked at critically. I believe this is associated with Dove Press, which is basically online self publishing. Not to say there can't be fantastic things out there, but chances are more likely this is not one of them.

[jinasc in reply to HeronNS]

That is the worry, that people will read it and not understand where it is coming from..........not everyone digs into backgrounds, just the nosy ones who think ah another miracle cure. Least one was the NHS Zealand had cracked it..........when we enquired with the NZ people they were so annoyed and they managed to get that website off grid....................no I don't know how....but they did.

[HeronNS in reply to jinasc]

Well, coda123 has pretty well put paid to anything I suggested, so maybe the study is valid and we have all, including patients with RA, been treated incorrectly all these years???

[coda123 in reply to HeronNS]

I was just tring to explain that Open Access journals are legitimate. But in terms of the study, it is a small prospective study and although interesting, just the beginning of such an approach. Hopefully others will try to replicate the study with larger numbers and additional questions.

[HeronNS in reply to coda123]

No, I appreciate you sharing your information. We are all here to learn!

[coda123 in reply to HeronNS]

Open Access Rheumatology: Research and Reviews is an international, peer-reviewed, open access, online journal. Publishing original research, reports, editorials, reviews and commentaries on all aspects of clinical and experimental rheumatology in the clinic and laboratory.

This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE).

Indexed online:

Emerging Sources Citation Index (ESCI), from 2016

PubMed and PubMed Central (Open Access Rheumatol)

Embase, from 2009 (Correct as at December 8, 2016)

Scopus, from 2009 (Correct as at December 8, 2016)

Directory of Open Access Journals (DOAJ)

OAIster - The Open Access Initiative

The Open Access is a publication model where neither readers nor a reader's institution are charged for access to articles or other resources. Users are free to read, download, copy, distribute, print, search, or link to the full texts of papers published under a CC-BY-NC copyright license and use these articles for any non-commercial purpose.

Papers published under a CC-BY license may be distributed, reproduced or adapted for commercial advantage without the prior written consent of DMP.

Published research is the foundation for progress in medicine and science. Open Access publishing therefore leads to wider dissemination of information and increased efficiency in science, by providing:

[HeronNS in reply to coda123]

Okay. It did turn up in my search in connection with Dove press. And the concerns raised by other people on this forum who know more about the field than I do does make it look like this one slipped through any peer-review net. Although I suppose, also, it depends who the peers are.

I acknowledge there is a strong case to be made for people to be able to publish alternative points of view and controversial research, especially considering how conservative the medical profession can be.

[Hidden]

Have not heard of this study and I've been reading alot about this stuff. Last time I had PMR, I just took 1200-1600 mg NSAID/day for about a year. It wasn't nearly as effective to reduce the inflammation. It made life just barely liveable. It would be interesting to taking the HCQ for a month as a trial basis. There's got to be better methods than CS out there. There just doesn't seem to be much info or research on this debilitating condition, which is odd.

On a different note, my mother was recently declared blind in one of her eyes. I am wondering if she's had GCA and never realized it. Looking back, she's had many symptoms of GCA. Something else to learn about, I guess.

[piglette]

I, like jinasc, am cynical. Why did this guy do the research, he is an internist with no particular interest in rheumatology? I don’t think I would use this particular research as the be all on PMR and GCA. No wonder some of our rheumatologist have such weird ideas about PMR and GCA.

[coda123 in reply to piglette]

Dr. Arthur Brawer is a rheumatologist in Long Branch, New Jersey and is affiliated with Monmouth Medical Center-Long Branch Campus. He received his medical degree from Boston University School of Medicine and has been in practice for more than 20 yearsDivision of Rheumatology, Department of Medicine, Monmouth Medical Center, Long Branch, NJ, USA

Correspondence: Arthur E Brawer, Division of Rheumatology, Department of Medicine, Monmouth Medical Center, 300 Second Avenue, Long Branch, NJ 07740, USA, Tel [phone], Fax [phone], Email

[piglette in reply to coda123]

My mistake

[Hidden in reply to coda123]

That might be but he needs to brush up his research skills. 😤

[HeronNS]

Believe me, when I first stumbled over the fact my symptoms matched a disease called "polymyalgia rheumatica", which I had never heard of, I immediately dismissed the possibility I had it because I didn't believe I could have something serious enough to need steroids for treatment. And promptly forgot about it. Months later when my new doctor confirmed this was indeed what I had I could hardly wait to get to the pharmacy and take my first dose. I won't say pred hasn't caused some side effects but I've managed them, although I am concerned about long term effects on the adrenal glands. Mainly I'm grateful there is an effective treatment for PMR, and as far as I can see the new drugs now coming along, the biologics, seem to come with a rather frightening suite of potential side effects, so really no better than pred, which was the miracle drug in its day and still considered one of the most useful medications for a broad range of ailments. Unlike some other diseases which are treated with short term pred we need it for a long time and can't really take holidays from it until PMR is in remission. I think the problem really is no one understands what PMR is. Like constantly pouring water where an underground fire emerges into the air, we can stop the forest from going up in flames but, until the seam of hidden burning coal is exhausted, we have to keep pouring on the water.

[PMRpro Ambassador]

I discussed this with Prof Sarah Mackie a few months ago. She advises not taking stuff that appears on Dove Press too seriously. It is not peer reviewed and has been in trouble for publishing some dodgy stuff. The author pays to get their work in print - which doesn't tend to increase its real value!

[coda123 in reply to PMRpro]

Dove Press follows these peer review guidelines

publicationethics.org/files...

[coda123 in reply to PMRpro]

Medical journals all have Article Publishing Charges

For example, the Article Publishing Charges

for the journal, BMJ Evidence-Based Medicine,

depend on the article type as follows:

£850 APC (exclusive of VAT for UK and EU authors): Editorials, EBM opinion and debate, EBM learning, Letter and EBM verdict

£1,950 APC (exclusive of VAT for UK and EU authors): EBM analysis, Evidence synthesis, Original EBM research and Research methods and reporting

ebm.bmj.com/pages/authors/#...

BMJ Evidence-Based Medicine offers a 50% discount on the APC for authors that meet all of the below criteria:

1) Student enrolled in higher educational institution OR

2) in medical training

3) Must be corresponding author

4) Project received no grant funding

[coda123 in reply to PMRpro]

you might be interested to know there is a "blacklist" of predatory journals scholarlykitchen.sspnet.org...

[Hidden in reply to coda123]

Thanks...that was some mental image...predatory journals. Sums up some of the woo stuff perfectly. 🤔

[Devedaaee]

Some very useful replies! I didn’t mean to start a controversy. The author seems to have been a practising rheumatologist for decades, with a long-standing doubt about the pred orthodoxy.

[coda123 in reply to Devedaaee]

not controversial, conversations about articles usually uncover some interesting insights, pro and con opinions about the author and the value or non value of the research, thanks for posting

[gifford7]

re: Arthur E Brawer MD, author of this article. I did a web search.

He has a controversial, quirky history. see:

schachtmanlaw.com/stuck-in-...

"Last week, I received an email from Arthur E. Brawer, who represented himself to be an Associate Clinical Professor of Medicine.5 Dr. Brawer kindly forwarded some of his publications on the subject of silicone toxicity.6 Along with the holiday gift, Dr Brawer also gave me a piece of his mind:

“I recommend you rethink your prior opinions on the intersection of science and the law as it relates to this issue, as you clearly have no idea what you are talking about regarding the matter of silicone gel-filled breast implants. Perhaps refresher courses in biochemistry and biophysics at a major university might wake you up.”

Wow, that woke me up! Who was this Dr Brawer? His name seemed vaguely familiar. I thought he might have been a lawsuit industry expert witness I encountered in the silicone litigation, but none of his articles had a disclosure of having been a retained expert witness. Perhaps that was a mere oversight on his part. Still, I went to my archives, where I found the same Dr Brawer engaged in testifying for plaintiffs all around the country. In one early testimonial adventure, Brawer described how he came up with his list of signs and symptoms to use to define “silicone toxicity”:

Q. Doctor, if a patient presented to you with green hair and claimed that her green hair was attributable to her silicone breast implants, unless you could find another explanation for that green hair, you’d put that on your list of signs and symptoms; right?

A. The answer is yes.

Notes of Testimony of Arthur E. Brawer, at 465:7-12, in Merlin v. 3M Co., No. CV-N-95-696-HDM (D. Nev.Dec. 11, 1995) (Transcript of Rule 702 hearing)

A year later, Brawer’s opinions were unceremoniously excluded in a case set for trial in Dallas, Texas.7 Surely this outcome, along with Judge Weinstein’s rulings, the findings of the court-appointed witnesses in MDL 926, and the conclusions of the Institute of Medicine would have discouraged this Brawer fellow from testifying ever again?

Apparently not. Brawer, like the Black Knight in Monty Python and the Holy Grail, still lives and breathes, but only to be cut again and again. A quick Westlaw search turned up another, recent Brawer testimonial misadventure in Laux v. Mentor Worldwide, LLC, case no. 2:16-cv-01026, 2017 WL 5235619 (C.D. Calif., Nov. 8, 2017).8 Plaintiff Anita Laux claimed that she developed debilitating “biotoxin” disease from her saline-filled silicone breast implants. In support, she proffered the opinions of three would-be expert witnesses, a plastic surgeon (Dr Susan Kolb), a chemist (Pierre Blais), and a rheumatologist (Arthur Brawer).............................................Dr Brawer, the author of Holistic Harmony: A Guide To Choosing A Competent Alternative Medicine Provider (1999), and my recent email correspondent, also succumbed to Judge Wright’s gatekeeping in Laux. The court found that Brawer had given a toxicology opinion with no supporting data. His report was thus both procedurally deficient under Federal Rule of Civil Procedure 26, and substantively deficient under Federal Rule of Evidence 702. Finding Brawer’s report “so lacking of scientific principles and methods,” and thus unhelpful and unreliable, the trial court excluded his report and precluded his testimony at trial. Id. at *7." To be fair see:

vitals.com/doctors/Dr_Arthu...

"The overall average patient rating of Dr. Arthur E Brawer is great. Dr. Arthur E Brawer has been rated by 12 patients. From those 12 patients 5 of those left a comment along with their rating. The overall rating for Dr. Arthur E Brawer is 3.7 of 5.0 stars."

[coda123 in reply to gifford7]

Interesting . He is still testifying and publishing . See ncbi.nlm.nih.gov/pmc/articl...

[Soraya_PMR in reply to gifford7]

Thanks for this. He does not include PMR in his ‘expert specialities’, and his reviews raised a chuckle, scoring 5/5 twice, 2/5 once and 1/5 twice. The comments are worth a read.

I think I can firmly discount his PMR research and treatment with NSAID and HCQ as hocus pocus after reading your links Gifford.

[Thelmarina]

Thanks for raising this Devedaaee - really interesting, especially the way this Forum went about checking the background and reliability of the research! It’s good to keep an open mind but we don’t want to be led down false avenues ...