How Can Autoimmune Arthritis Diagnosis Be Improved? | Rheumatoid Arthritis Warrior

How Can Autoimmune Arthritis Diagnosis Be Improved?

Why Rheumatoid Arthritis diagnosis must be improved

RA Diagnosis Carnival postWe have over 60 Rheumatoid Arthritis diagnosis stories here on Rheumatoid Arthritis Warrior. In some ways they’re all unique, but there are common threads. One familiar theme is that Rheumatoid Arthritis diagnosis is often difficult or protracted or confusing. This is not only true for Rheumatoid Arthritis, but for other autoimmune arthritis diseases such as Psoriatic Arthritis, Ankylosing Spondylitis, and of course, Juvenile Rheumatoid Arthritis / Juvenile Idiopathic Arthritis.

I’ve been thinking about what might be done to improve diagnosis and reduce the time it takes. Then I remembered that back in 2009, I wrote an article for the Rheumatology section of Healthcare Professionals Live, Early Treatment of Rheumatoid Arthritis Is an Elusive Goal. I especially wrote it for physicians to appeal to them to consider that early aggressive treatment so often touted is not even possible without early diagnosis.

I ended the article with suggestions for earlier Rheumatoid Arthritis diagnosis

  • GPs could be better informed of common symptoms of early RA.
  • Doctors could be strongly encouraged to add anti-CCP tests to their screening of suspected RA.
  • More doctors could take advantage of the internet to learn about what RA looks like via RA blogs, forums, etc.
  • When examining a patient with dubious symptoms, doctors should follow the golden rule of medicine: treat this patient the way you would want your mother treated.
  • A campaign for general awareness of RA ought to educate the public about the symptoms of RA and the serious nature of the disease.

What do you think doctors or patients could do? Are there any specific ways we could implement these ideas or other ways to improve diagnosis or shorten the time it takes? Please comment if you have ideas.

Improving Autoimmune Arthritis Diagnosis Blog Carnival

If you have a blog and would like to write a post on this topic to be included in the next Blog Carnival, send the link of that post to me at Please put “blog carnival” in the subject line of the email. I plan to post the next blog carnival next Monday January 10, 2011.

What could be done to reduce the time that it takes for a diagnosis? Please feel free to include any details from your own story, whether it was a long or short diagnosis period.

Note: Our first Rheum Blog Carnival was great fun. If you missed it, click here to read and find all 13 participating blogs. Rheumatology Blog Carnival #1: Causes of Rheum Un-Awareness

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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20 thoughts on “How Can Autoimmune Arthritis Diagnosis Be Improved?

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  • January 3, 2011 at 12:19 pm

    It is a shame that an autoimmune disease that can be controlled and even stopped with medication,is not caught before it does irreparable damage. Arthritis can have such devastating results. Joint pain must be taken seriously by family doctors.
    I was not diagnosed until the bones in my hands,feet and knees became so misshappen that it affected my ability to walk and button my shirt.
    I thought every one felt pain like mine. I would hike all weekend and go to work on Monday with pain all over. I felt like I had been hit by a Mack truck.(That phrase should be listed under rheumatoid arthritis in the dictionary.) Pain was just the price paided for having fun. I was young and I believed I would live forever.
    I did see a doctor for the “all over” pain. I was tested and diagnosed with Fibromyalgia. I did not test positive for Rheumatoid arthritis. There were no drugs to treat fibromyalgia at that time. I started a vitamin regimen and learned to live with the pain.
    I had pain in the joints of my hands. I saw my orthopedic doctor for this specific pain. It looked like osteoarthritis on X-rays. I had the same in my knees. I had pain in my feet as well. This was all diagosed as osteoarthritis, bunions, hammertoe and plantar fasciitis.
    All these conditions went by the wayside when my spine started failing. The spine problems were totally due to osteoarthritis. (Back problems ran in my family.)I also had a curvature of the spine diagnosed on a family doctor visit for back pain. I spent the next 10 years trying to fix my back and keep out of a wheelchair.
    I was able to stabilize my back pain at an “able to live with” stage.
    Then I discovered I had rheumatoid arthritis. I tested positive. I had a diagnosis. What a relief that was. It wasn’t all in my head. Yes,I heard the phrase, “It’s all in your head” often. I was told fibromyalgia didn’t exist. I was relieved that I had rheumatoid arthritis. That is the saddest part of my story. I was relieved that I had a disease that would eventually stop life as I knew it.
    I had no idea that RA was that serious a condition. I am more informed now. I’m also unable to walk without assistance. My hands have become unreliable. I sometimes fall asleep at the kitchen table while daydreaming about the days when I wasn’t tired, ever.
    Now I spend my time researching the different treatments available. It can take years to find the medication that works for your RA. I haven’t found it yet. I am 58 years old now. I was diagnosed and started treatment at the age of 53. My symptoms started when I was in my late 20’s. How can a person have a disease for thirty years and it not be discovered?
    RA needs a big time publicity campaign.If you have RA tell the world your story. Put it on your facebook page. Twitter it. If you don’t have RA make it a point to become more informed. The public needs to know how serious this disease is.

    I saw a podiatrist for my foot pain. I was diagnosed with plantar fasciitis, bunions and a hammertoe

    • January 4, 2011 at 11:27 pm

      Thanks for the comments and suggestions Elizabeth. I’m sorry it took so long for your diagnosis. Unfortunately, your story is not atypical, as our RA onset story pages show. This is another way that people can help spread the truth – to share their stories in that way.

  • January 3, 2011 at 1:01 pm

    How can we improve AI diagnosis? The simplest way I can think of is to define a standard for screening similar to what is seen with other diseases that have a genetic component. For instance, my mother had cervical cancer, so standards of care state I should have a cervical biopsy at age 50 and every five years thereafter. Why can’t antibody screening be a part of periodic screenings for people who have an immediate family member with AI? I realize many people are seronegative, but having these tests in the standard screening series for a certain patient population would, I think, lead to many more early diagnoses than we see now. Maybe it would also keep the AI discussion more in the forefront when docs review medical history with patients.
    It seems that now AI is the LAST thing they consider when presented with symptoms (even after hypochondria *sigh*).

    • January 4, 2011 at 11:29 pm

      Great suggestions Jackie!!

      And about the last thing – you know that is a good point. So which is more likely or common?

      • January 7, 2011 at 9:12 am

        Kelly, I have no clinical experience, so I can’t say whether hypochondria is more or less common than RA. BUT, it’s crystal clear from comments to your blogs that it is quite common for docs to dismiss RA symptoms as psychic. Is that a product of shiny new docs spending their “formative years” of internship in hospitals and ERs, where drug seeking is more common, and thereby becoming cynical and suspicious? I’m not the appropriate person to answer that question, but I have my own suspicious thoughts on the subject.

        I imagine there is an element of human nature, too – the last thing a doctor wants to diagnose in his patients is something he is helpless to cure or control. I think most doctors get into medicine because they want to cure illness and relieve suffering, and I think RA makes the smart ones feel pretty helpless, since the science and methods are pretty sketchy. So … RA is, literally, THE LAST THING they consider.

        That’s why I advocate a standard screening based on family history. It removes subjectivity from the equation – even if my doctor thinks I’m a whiney exaggerator of minor age-related symptoms who wants narcotic relief for my imaginary pain, if I have an immediate family member who has been diagnosed with an autoimmune disease, standards would dictate that I have annual screening bloodwork for AI. While with the weakness of current diagnostic tools, it’s not the single perfect solution, I feel it would be a step in the right direction.

        • January 7, 2011 at 1:07 pm

          Excellent points, Jackie. Thanks.

          Some rules on the matter might help about who to test. I had a GF w/ RA, positive ANA, and various symptoms for years, but Rf wasn’t positive yet, so no diagnosis. They were not doing anti-CCP regularly. I dont think many GP’s are still.

  • January 3, 2011 at 5:39 pm

    Happy New Year Kelly.

    Tough question. I think one of the problems with asking a patient this question is that we’re all biased. We all have the knowledge of how our disease presented and our own path to a diagnosis.

    The way I understand it the diagnosis with RA is very much like a game of “name that tune.” If a patient goes to the doctor with half the notes to the song being played the doctor should be able to identify the song. If a patient walks in with 4 notes being played, of course most doctors will scratch their heads. They need more notes and thus patients wait and suffer. But what more can we do but wait to see where it goes. We wait to hear more notes. We don’t have the tests available right now that clearly say “yes, you have RA and it couldn’t be anything else.” Until we have better diagnostics, sadly, I think we’re stuck. It seems the only thing we can do is improve doctor education.

    • January 4, 2011 at 11:41 pm

      Hi there.

      Thinking about your analogy, sometimes in a contest some players do better. Maybe you already meant that, but instead of waiting for more notes, sometimes we can find another contestant who knows the song better.

      Did you see Jackie’s ideas? What if we had a screening process in place? If people were asked about the typical symptoms list & family history, they could be identified & advised about getting anti-CCP tests or nuclear bone scans, etc. if they start to have severe pain & are in a risk group – just off the top of my head. But we could devise a process that would help primary doctors learn to identify RA better. Then educate the public via public service announcements and magazine ads the way it has been done for MS, Diabetes 1, and Lupus etc.

      • January 5, 2011 at 12:58 am

        Definitely there are some docs that are very adept at that game and can identify “songs” with very few notes. I count them as the rare gems in medicine. Keeping with the analogy, what we need is an iPod that would tell you the song without listening to it.

        Screening would be a great idea. But one problem with screening is the interplay between specificity and selectivity and rates of false positives and false negatives. From what I know of the current diagnostics and tests for RA, I don’t think that they’re really up to the challenge. We need better tests.

        Thinking about my own RA diagnosis journey, I think I was fairly “lucky” in that my RA sprang from nothing to something. I’m fairly young so it couldn’t be written off as just aging. I also presented with many of the textbook symptoms. My PCP recognized the pattern, ordered a few RA lab tests and with some mildly positive results on those I was referred to a rheumatologist. So the current system worked for me, but clearly is isn’t working for everyone. Perhaps that’s where the focus should be. How to better capture the people that don’t present in the “typical” manner.

        • January 5, 2011 at 1:14 am

          You know what though, I think I remember your pcp had a mother w/ RA right? So that might help him recogize it when he sees it. (Sorry if that was someone else.)

          I have to take the many patients at their word who tell me they were dismissed for so long by general doctors when their symptoms would seem suspicous of RA to me. It’s easy for me to believe them since that is my story too. Doctors were telling me it’s not even possible that I have RA since I have a normal sed rate. Turns out a large percent of patients do. What if GP’s knew that?

          Do you think a picture of RA like that on the RA story pages here would be informative to those docs who have a “tin ear” for the Name that Tune game?

          • January 5, 2011 at 1:55 pm

            Hmmm…I don’t know enough about medicine to say for sure, but let me throw out this suggestion. I didn’t expand on the thought in my initial post about bias. As people with RA and with a lot of knowledge of RA when we see a particular pattern of symptoms that fits what we know of RA, then we say that it really sounds like RA. You now have to look at it from the perspective of the doc. RA is not uncommon, but I think it is somewhat rare (~1-2% of the population right?). A lot of the symptoms of RA can be caused by other conditions that are much more common. I think a responsible doc would go through the more likely causes before finally arriving at RA. A diagnosis of RA is serious stuff with some serious meds. I don’t think a good doc would want to get that wrong.

          • January 5, 2011 at 2:14 pm

            Exactly. But when patients read what’s written in their charts, hypochondria shouldn’t be there as often as it is. The process should not be hindered by dismissal. I bet patients can tell when they are being dismissed or a when a reasonable anwser is being sought. A large percentage of patients tell me the former. I believe them because it happened to me so many times. Sometimes I think it was allowed to happen to me so I would believe patients now. I know that’s ethereal – just how I feel right now.

          • January 5, 2011 at 2:38 pm

            Well there are quite a few jerks out there. How do you train someone not to be an ass?

            I believe you. I believe what people on the blog say. I believe this stuff happens to patients.

            If we had hard data from a reliable test it would be much harder to dismiss us.

  • January 4, 2011 at 6:26 pm

    It’s more than just publicity issues or a need for better science in the diagnostic tests: it’s about changing the common primary care physician’s attitude toward invisible pain and injury. Most doctors are rushed and over-scheduled. I feel like many subscribe to the philosophy of “If it really hurts the patient that badly, they’ll come back with the same complaint”. The next problem is that many doctors are quick to slap on the “diagnosis” of aging or lifestyle onto those patients who do return. This happens over and over while unseen damage is being done to the bodies (and minds) of the patients.

    Age, gender and activity are only factors that POSSIBLY point to a diagnosis, but it seems like many doctors use them as the answer to way too many symptoms. Can some RA warriors open jars or walk? Of course, but how much does it hurt them? But if you can do those things many doctors won’t take your concerns seriously. If you’re a woman the doctor might see you as hysterical or overly sensitive to pain. If you’re in your mid-30s, the doctors are likely to blame your insecurity with your natural aging.

    Generalizations and minimization are what delay diagnoses before testing options even come into play. Doctors must listen to every patient and take every concern seriously to treat disease and illness effectively. Over-scheduled and dispassionate doctors can’t or won’t do that.

  • January 5, 2011 at 10:29 pm

    I think I was lucky..symptoms started but I just kept telling myself “oh its this,oh its that” 3 months went by and wham..I knew there was something very wrong…went to see my reg.dr….he tested me for R.A,lupus and thyroid…he told me all my tests didnt indicate any of them ..but i had inflamation and he wanted me to see a rheumatoligist anyway. My wait to see a rheumy was about 3 weeks…He did all the same 1 was the anti-ccp I think?..and it was off the chart..started meds imeditaly…I think the problem isnt always the Doctors its seems to me its insurance..he had to try placlinil(sp) mtx..before giving me the most expencive newer drug. Insurance plays a big part..just a thought!!


    • January 5, 2011 at 11:54 pm

      thanks for the comment Kim. Yes, that test is very specific for RA and positive in most RA patients. If it could be run on anyone w/ RA symptoms, it could help improve diagnosis. Maybe primary doctors could run it. Probably there would be resistance for the reason you mention: cost.

  • January 6, 2011 at 9:54 pm

    Hi, this might have been published previously on your site, Kelly, but I am fairly new here. There is the National Data Bank for rheumatic diseases that RA patients can partipate in. It is a questionaire about diagnosis, meds, etc., and will help in research and putting more statistics together concerning rheumatic diseases. This participation can only help the medical community learn more about those with RA and other rheumatic diseases. Here’s the link:

    • January 7, 2011 at 12:05 pm

      Hi Lora,
      Welcome! Yes, they do good work. They have been mentioned a few times. And we do quote their studies some too.


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