The Problem with Rheumatoid Arthritis Information: Why is RA so hard to study and cure?

Problem with Rheumatoid Arthritis Information

I guess YouTube is not the best place for RA information

There sure are a lot of YouTube videos with RA cures. I watched several this weekend, getting distracted while doing research. Several thoughts competed in my mind:

  • “No wonder  _________ (fill in the blank with whoever’s name) thinks I’m crazy for taking RA medicines if she’s been exposed to this stuff.”
  • “How much money do these nuts make from these schemes?”
  • “They can’t all be wrong, can they? One of these cures must be real…”

What is so confusing about Rheumatoid Arthritis? Information is everywhere…

The nature of Rheumatoid Arthritis makes even simple questions difficult to answer. I’ve never seen a subject so misunderstood by the public. Let’s look at four aspects of RA info which show what makes Rheumatoid Arthritis difficult for non-RA’ers to comprehend and give scientists trouble discovering either the cause of RA or a cure.

1) Severity or Course of RA

Various forms of RA exist from mild to severe. Rarely, Rheumatoid Arthritis can disappear as suddenly as it appeared. It is believed that only about five percent of cases see this complete remission; however, you can see why people go crazy trying to figure out how to replicate that experience.

For the other 95 percent, the disease varies in both severity and pattern of symptoms. There are also varying amounts and types of permanent damage to joints or other bodily systems. Rheumatoid Arthritis can progress slowly or very rapidly. Researchers sometimes classify chronic Rheumatoid Arthritis patients by various courses of progression.

2) Rheumatoid Arthritis Flares

Most RA patients experience periods of worsening and lessening of Rheumatoid Arthritis symptoms, sometimes referred to as flares and remissions. The length and pattern of these periods can vary between patients and within a lifetime for a particular patient. Whether or when Rheumatoid Arthritis flares is not predictable. Some patients live in continuous RA flare and do not experience any pattern of breaks in RA symptoms.

3) Rheumatoid Arthritis Medicines

By now you may not be surprised to hear that Rheumatoid Arthritis medicines work differently on different patients. The medicine which is effective at reducing symptoms for one patient may not reduce them as much for another patient. Some experience a clinical remission which is induced by medication, while others flare continually with the identical medication. I read recently about the hope to eventually predict with blood tests which disease modifying medicines will be more effective for a particular patient.

4) Rheumatoid Arthritis Tests

Tests can only measure the various types of antibodies that scientists have previously identified which show up in the blood of most RA’ers at some point. However, a substantial percentage of patients never have a positive result on these RA blood tests. Yet they continue to have signs of Rheumatoid Arthritis including severe symptoms and evidence of progressive damage.

Doctors also routinely test for inflammation levels, again using only the tests that they have. The most common tests are the CRP and the ESR. Unfortunately, these tests don’t always correlate with symptoms or progression of damage. Patients may have varying results to these tests during the course of the disease despite the use of RA medicines. Sometimes certain medicines cause a lowered test result and sometimes they do not.

Interpreting Information on Rheumatoid Arthritis

If there is a unique footprint to an individual’s Rheumatoid Arthritis, this definitely contributes to the difficulty of making information on RA meaningful. I’ve met non-RA’ers who think that means that Rheumatoid Arthritis is a subjective, unproven disease.

I disagree, of course. Rheumatoid Arthritis is a provable disease. The symptoms are well documented. The damage is tangible. It is just that we are still very early in our understanding of RA’s causes and possible treatments.

Saying that one person’s Rheumatoid Arthritis is different from others’ does not mean that anyone’s RA is imaginary. Many serious diseases come in various forms and levels of severity including MS, diabetes, cancer, pneumonia, and heart disease. RA is a “legitimate” disease; it will just take some extra effort to understand.

Some other posts you might like:

Blood test series: Is there a blood test for Rheumatoid Arthritis? Part 1

RA flares: What is a Rheumatoid Arthritis Flare?

What the heck is remission? What is Remission of Rheumatoid Arthritis? Part 1

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

12 thoughts on “The Problem with Rheumatoid Arthritis Information: Why is RA so hard to study and cure?

  • December 28, 2009 at 1:05 pm
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    I believe a large part of the problem is that women are more susceptible to acquire this disease yet men usually get a more severe form of it, which as we know traditionally men are taken much more seriously when they have a health problem. Also, a woman’s symptoms of many diseases such as heart disease show totally different symptoms; therefore women were pretty much ignored for a long time as not being recognized that we even developed heart disease. So, in my generation, hysteria or nervous conditions or hypochondria were the usual diagnosis for ailments. It wasn’t until the last 20 years that doctors really paid attention to women’s issues, so they are lacking what I believe is the background of years of research necessary to truly understand how women’s physiology is so different to men. There are still dinosaurs in the male doctor thinking in this as we all have been exposed to some pretty asinine doctors who will tell you it’s all in your head. It was not that long ago that the medical community realized that women actually did experience cramping and inflammation during their menstrual cycles and this was an issue that was considered as a “hysteria or hypochondria” issue in women for 100 years. I do not test positive for any tests for this disease except that there is inflammation showing in my blood, so as a woman, I am not giving up but am becoming even more tenacious in my battle to get answers. The more attention drawn to this disease will be the best way to get more research done in order to find a cure or at least a better way of dealing with it, hopefully without having to take so many drugs that can harm you in other ways. So, yell loud, ladies and eventually, someone is gonna listen.

    Reply
  • December 29, 2009 at 1:30 am
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    Kelly,
    Informative post! I’ve also been reading about genetics and effectiveness of biological medications and am planning to dig deeper and write a post about it soon.

    I’m so glad that even though my rheumy runs lots of blood tests, he always relies on symptoms and other data like xrays and MRIs. ESR is such a general test…it’s used for all sorts of diseases.

    It is interesting that the general public does not tend to differentiate between differences in severity, symptoms, and effectiveness of treatments in most serious diseases including RA. I guess we want to reduce things to simplist of terms.
    Andrew

    Reply
  • December 29, 2009 at 5:20 am
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    If only a few small joints are inflamed, blood tests might not detect the inflammation. This makes it difficult for non-rheumatologists to see that there is inflammation. And serious inflammation that might destruct joints.
    High elevation of rheumatoid factor and/or CCP-antibodies might predict erosive disease, but I also have seronegative patients, that have erosive and make that serious erosive (mutilating) disease.
    Rheumatology can be easy, but you have to do every day, if not it gets complicated.
    CU Lothar

    Reply
    • December 29, 2009 at 8:30 am
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      Rheumatology is a complicated practice everyday. Only the bravest should attempt. O:-) Thank you, doctor for the thoughtful comments.

      I have heard patients tell of every combination of test results with severe RA in many joints & obvious damage. I am sure that scientists are working to identify more antibodies & improve tests to measure RA. However, meanwhile I wish more docs did not trust them too heavily over what patients show / say.

      As for the general practioners & the public, we must educate…

      Reply
    • December 30, 2009 at 8:41 am
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      Methotrexate & a Biologic, which was recently changed to Orencia. Orencia is administered by I V and is slow acting. Doc says to expect to feel better in 3 months. I’m so hoping their commercials are true. 😎
      Is it working? I’ve written a lot about that on the blog. A couple of places are this post and this post.
      The short answer is: yes and no. Times off of medicine show me how much the RA medicine helps me because I’m completely disabled again pretty quickly. However, with all the medicines the best I have ever been is about 50% of ability before this happened. :sidefrown:

      Reply
  • July 29, 2012 at 12:53 am
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    Hi Kelly, I have a very recently developed theory on some RA remissions. First, let me tell you that I am not an RA’er, but have been exposed to it first hand all my life as my mother, now 76, was first diagnosed in her early 20’s and has suffered greatly and gracefully my entire life. I have watched her fingers curl; her joints swell to where I thought the skin would break open; a number of surgeries for artificial joints; etc.. I am now watching her suffer from something entirely different…….a severe staph infection, Bactermia or Sepsis? Anyway, what is very interesting to me is that her RA is NOT flaring at all (she is on a 20mg a day prednisone dose) even though she is unable to now take ANY true RA medications, and she was on many prior to this. And, her SED rate is better than it has ever been at 29 (I don’t know if it’s ever even been close to that low), her CRP is some worse.
    Now, for my theory (which the doctors say is “highly unlikely” – they’ve said that about every one of my suggestions so far that have turned out to be right on & won’t even consider that I might be on to something):
    I believe her over active immune system is trying to help fight the infection and is NOT attacking the joints, etc., because of the infection. I don’t know if my mother is going to be strong enough to live with the combination of RA & Staph long term, but am really curious to know if there is a correlation and if maybe, just maybe, kind of like a flu vaccine, if a live infection were introduced to the body of an RA patient AND it were something that could be controlled somewhat with antibiotics, could it help ease RA symptoms/damage because the RA is kept busy? Just a thought as I have been searching for someone to “think outside the box” just a little. Please let me know what your thoughts are.
    It is probably too late for any of this to benefit my mother, but if it could help future RA’ers enjoy a less painful quality of life, I think it would be worth looking in to……..I just don’t know who I can suggest it to that might take it seriously enough to AT LEAST CONSIDER THE POSSIBILITY!
    Thank you for your time.
    Brenda Case

    Reply
    • July 29, 2012 at 2:28 pm
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      Hi Brenda. We have seen some patients whose RA is less active during infections, but not everyone’s immune system responds in the same way. I agree with you that it’s a clue that should be studied – that at least some patients seem to be better while the immune system is “busy” with an infection or virus. The immune system of someone with RA is “broken” and the patient is also more likely to die of infection, even without the risk of medications being added.

      Reply
  • November 12, 2012 at 3:51 pm
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    I agree with Brenda except that I believe it is the antibiotics that reduce the pain, not the infection itself. It is well known that antibiotics become less effective over time if abused. I would rather save the antibiotics as a life-saving tool if needed.

    Reply
  • April 2, 2013 at 4:29 am
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    I’ve been in remission for 19 months now, ever since I was 37 weeks pregnant with my baby. My rheumy thinks its the breastfeeding hormones that are doing it. I’m not on a single med. I wish there was a way to study this! I also want to keep pumping once my toddler is done nursing and see how long I can prolong this!

    Reply
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