American College of Rheumatology Redefines Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

American College of Rheumatology Redefines Rheumatoid Arthritis

prettiest mold I can find

Change of plans

This post was begun last week. The original title of this post was ACR: Change the Diagnosis Guidelines! (It is still that in my laptop.) However, Monday morning I learned that late on Sunday, The American College of Rheumatology in cooperation with the European League Against Rheumatism (EULAR) released new guidelines for diagnosis of Rheumatoid Arthritis.

The ACR is meeting right now in Philadelphia in what they call their 2009 Scientific Meeting. Until two days ago, the guidelines used were those adopted in 1987. Please see this post on the ACR guidelines for Rheumatoid Arthritis diagnosis where you can see why I called the 1987 ACR guidelines “moldy.”

Tension building over criteria for Rheumatoid Arthritis diagnosis

I sensed that a tension was building over the last few years as more studies showed how crucial early treatment is for Rheumatoid Arthritis. In Can I Delay Treatment for Rheumatoid Arthritis, part 2, I quoted University of Kansas Hospital researchers who say 60% of people with RA have joint damage within 2 years so they recommend that disease modifying treatment begin within 3 months of symptoms. Tension is unyielding between that perspective and the current guidelines. Patients often feel that their doctors have made that early treatment impossible by failing to diagnose Rheumatoid Arthritis until irreversible damage is obvious.

The 1987 criteria have been part of the problem because they do not usually allow for early diagnosis since they describe more advanced disease. How can patients get early treatment unless they get early diagnosis? And how can they get early diagnosis when the diagnostic standards are a description of advanced disease? If you have read much of this blog (or many others), then you know the sad results to this dilemma.

In the rheumatology doctor’s own words

Dr. Alan J. Silman, a Manchester University rheumatologist, says, “Satisfying the 1987 criteria is bad news.  No one waits till the disease becomes erosive to start disease modifying therapy.” Well, we wish that no one waited. But that is not yet the case.

Missing the mark from the beginning

Last week, I reviewed the book What to Do When the Doctor Says It’s Rheumatoid Arthritis. I could not believe what Doctor Fischer says on page 35 about the true purpose of those guidelines. “ACR criteria can be helpful in making a diagnosis, though some doctors can detect RA even if a patient doesn’t fully meet these guidelines… In fact, the ACR originally created the criteria to provide uniform research standards, allowing doctors and medical experts to do research, reports, and clinical studies among patients with comparable symptoms.”

Did you get that? He says those guidelines were never intended for use in regular clinical diagnosis! So, how did those 1987 guidelines become the gold standard for diagnosis in the eyes of practicing rheumatologists around the world? What were those rheumatologists taught in years of training? No wonder so many books written by rheumatologists are wrong about so many facts about RA. No wonder it’s so tough to get answers about Rheumatoid Arthritis.

The big question: will RA diagnosis improve?

Will the new diagnostic standard facilitate earlier diagnosis of Rheumatoid Arthritis? It may take months to sort that out. We’ll begin to examine that here next time. Get a peek at the actual criteria using the link below to Mitchel Zoler’s blog.

Hurray for Photojournalism!

Special thanks to Mitchel Zoler, Pennsylvania medical reporter for his reporting from the ACR meeting. His report is brief and clear. You can read it here. He has posted a photograph of the new guidelines which is extremely helpful since the ACR has not posted them on their website yet.

Continued: American College of Rheumatology Redefines Rheumatoid Arthritis, Part 2

Part 3: American College of Rheumatology Redefines Rheumatoid Arthritis, Part 3

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/

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14 thoughts on “American College of Rheumatology Redefines Rheumatoid Arthritis

  • October 20, 2009 at 10:44 am

    The new guidelines look promising. I hope joint deformity becomes a thing of the past!

  • October 20, 2009 at 1:08 pm

    It is interesting how guidelines designed for research purposes (which are a good thing) became used (or misused) for diagnosis. Perhaps the new guidelines will more friendly towards patients. This is why it’s so important to find a good rheumatologist from the beginning! I’m still convinced that there is such a wide variety of symptoms because of the wide variety of types of arthritis and individual reactions (genetic). I plan to write about this soon.

    Thanks for being on top of this breaking news.


  • October 20, 2009 at 1:46 pm

    I’m hoping they left out “symetrical involvement”. Mine was not until joint destruction was done.

  • October 20, 2009 at 3:51 pm

    Thanks for posting this. In thinking back to when I was diagnosed, if these changes would have been in place then, I would have gotten better treatment and not be in the situation I’m in now. Everything happens for a reason and I’m glad future warriors will at least have the chance we never got 🙂

  • October 21, 2009 at 2:45 am

    After reading this blog today and the 1987 criteria for RA diagnosing, I feel like a lab rat… we are the ones they are experimenting on in hopes for the next generation?? I hope they can help the generation I am in, fingers crossed.

  • October 21, 2009 at 6:03 am

    I have strayed outside the box. I am neither tame, nor wild, but a bridge inbetween the etheric and the physical, weaving together the dreams of stars and giving them a physical home here on earth. I’m very peaceful, very loving, very affectionate, and very subtle. I understand that heavan is always ten steps beyond our greatest fear and desperation. True strength is not an act performed phsycially or in front of another. Strength is the perseverance to persue a dream all alone, even when the entire world tries to stop you. The greatest journey begins and ends with the First step…
    I lay down my plans, my guards, my defenses and am held like a child. My missions, my appointments, my ideas, and the smothering safeguards i have built to protect me from the world, only creating more of the illusion of seperation. My trust is in the river of you sweet spirit. As my very self, you know my desires before i ask, though you often wish to see that i will choose it. I am learning how very happy you want me to be. The only thing you ask of me is that i would not deny myself anything. Everything i have clung to as a guard and a safety is little more then a crutch. I simply surrender, and will let the river have its way, for it is simply my very self- I will flee and deliver my strength to cont fighting this monster known as RA, it may leave me raw but it will never take away who I am….. strong and living– Viesta

  • January 9, 2010 at 12:51 pm

    OMG!! Viesta I love your poem!!! Can I please copy it and keep it? I have read this blog for quite some time now and have told many other people about this great place. Your poem is truly magic!! Thank You for shareing it with us!!

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  • July 23, 2010 at 11:07 am

    I have had no luck yet at getting my comments to post–let’s see if this one works.

  • July 23, 2010 at 11:08 am

    Yay! It worked–now I’ll go back to the posts I really had something to say about.

  • March 1, 2012 at 9:24 pm

    I have suspected RA for a few years, my grandmother suffered horriblly.
    I requested tests at a recent Doc. visit. My test came back as CCP AB 61.8
    antinuclear Ab 0.2
    RF,Quant <10.0
    I have been refered to a Rheumatologist but can't get in for 7months. I'm going crazy trying to figured out on my own what exactly these results mean.

  • October 24, 2012 at 10:07 am

    Either I am living in a good area of the country (medical-wise) or I just had the luck of the draw, but when I saw my GP for a diagnosis of my first inflammatory experience, she immediately requested an autoimmune panel be done. She suspected RA from the get-go. She also recommended I follow up with a rheumatologist, regardless of the outcome of the bloodwork. I only switched rheumies because my first one required too far of a drive and it was exhausting!! Sometimes I think (even though this sounds completely biased) that female doctors are more inclined to go with gut feelings. I’ll hear about this one.


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