The Mortality Dragon: Do Rheumatoid Arthritis Patients Have to Die Early? | Rheumatoid Arthritis Warrior

The Mortality Dragon: Do Rheumatoid Arthritis Patients Have to Die Early?

Reasons for the high mortality rate with Rheumatoid Arthritis

Rheumatoid Arthritis mortality rate postThis is not a morbid post. If we’re going to fight a dragon, we need to know about the dragon. Why do Rheumatoid Arthritis patients have such a high mortality rate? Some of you have probably heard me speculate about mortality and RA in response to questions. Last year, I briefly examined what’s called the RA mortality gap.  A few months ago, I found this 2 year old article called “Why do people with rheumatoid arthritis still die prematurely?” I pasted the link into my to-do list under these words: “This article agrees with me!”

Of course Professor Gabriel had no idea I agreed with her – it was just some shorthand for my eyes only – until today. You may recognize Dr. Gabriel’s name. She is the Mayo doctor who was quoted on the blog a couple weeks ago about the incidence of RA increasing in women. As a matter of fact, I just checked to be sure & yes, I quoted another study by Dr. Gabriel last year on the mortality gap. So what was so important this time? The article describes the three main reasons for the high mortality rate with RA.

In conclusion, three lines of evidence can explain why patients with RA die prematurely and why the mortality gap between RA and the general population appears to be widening. First, not only do patients with RA have a higher risk of multiple comorbid conditions but also they tend to experience worse outcomes after the occurrence of these comorbid illnesses. Second, patients with RA may not receive optimal primary or secondary preventive care. And third, the systemic inflammation and immune dysfunction associated with RA appears to promote and accelerate comorbidity and mortality. These findings indicate that effective, even optimal control of traditional risk factors alone, while important, will be insufficient to reduce the excess mortality in RA.

Summarizing the causes for excess mortality:

  1. Co-morbidities and worse outcomes (mainly cardiovascular disease).
  2. Less adequate preventive care.
  3. Systemic inflammation accelerates mortality.

You can read the whole article in the Annals of Rheumatic Diseases. Dr. Gabriel even calls for large randomized trials to specifically study how to eliminate premature death in RA patients. But I’d like to focus for a moment on our role as RA warriors against this disease and the years it can steal from us.

Fighting the high mortality of Rheumatoid Arthritis

Together, some warriors and I are reading the new book Laugh, Sing, Eat Like a Pig by e-Patient Dave deBronkart; “e-patient” stands for “empowered” patient. As Dave confronts cancer, he realizes, “If you live long enough to be killed by a bus, cancer didn’t kill you. HA!” Our goal is to become very wrinkled and gray and be hit by a bus.

What can we do? Now that we know what some reasons are for excess mortality, we can find ways to fight back.

  1. This is the reason I’m constantly telling RA’ers to keep asking until they get answers. Don’t accept symptoms as “just” RA – especially extra-articular symptoms. Of course RA may have been the cause, but it still may be able to be treated.
  2. Treat the Rheumatoid Arthritis aggressively and some studies show you may be treating the co-morbidities and inflammation as well.
  3. Get thorough preventative care. Here is an earlier article in the Journal of Rheumatology by Dr. Gabriel and others on the lack of preventive medical services for Rheumatoid Arthritis patients. We’ll talk more about preventive care with RA in the future.

Edit 2/20/2013: updated link to abstract document because pdf was no longer viewable without cost.
Edit 3/23/2013: updated another link for the same reason.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 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 by 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 thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

15 thoughts on “The Mortality Dragon: Do Rheumatoid Arthritis Patients Have to Die Early?

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  • August 19, 2010 at 8:01 am
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    I am in the process of undergoing cardio testing. Do I believe it can accelerate… oh heck yes. I never had a leaky valve or thickening of my heart. Now, it is present along with some symptoms my specialist is not liking. This is so important, especially for WOMEN, to follow up with any chest discomfort, exertion, pain between the shoulder blades, seizing of the heart muscle and so on. Be your own advocate!! Be smart and don’t stop until reasoning wins. Tazzy

    Reply
  • August 19, 2010 at 8:15 am
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    I love your attitude, and not that it’s positive – it’s proactive, it’s DO SOMETHING, DO WHAT YOU CAN. Absolutely perfect.

    You’re also educating a lot of people out here about RA. I had no idea you-all face so many challenges that don’t appear in mass media coverage. Good for you.

    Reply
  • August 19, 2010 at 10:02 am
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    Since were speculating on shorter life spans for people with RA and the higher incidence of cardiac comorbidities, I would put forward the following conjecture. In addition to the inflammation, perhaps the cardiac problems are due to lack of physical activity and mobility due to disability. As stated elsewhere on your blog, many RA patients are diabled within 10 to 20 years. It is well known and documented that muscles that aren’t used will atrophy. The same is true for the heart. Perhaps finding ways for people that are disabled to challenge their heart muscle regularily would reduce the mortality gap due to cardiac comorbidites.

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    • August 19, 2010 at 10:24 am
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      Actually, cachexia is the main reason for muscle atrophy with RA. And from what the studies say, neither muscle atrophy nor inflammation is the primary cause of the CVD of RA. There are genetic predispositions for a particular type of CVD that are being studied as shown here.

      edit: I’ve been working on a heart disease post for a while. It seems the CVD of RA is not like other CVD for several reasons. So it also does not respond to therapies the same.

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      • August 19, 2010 at 11:07 am
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        Don’t confuse muscle atrophy with cachexia. Cachexia is a very complex syndrome. I was more referring to the loss of muscle due to lack of activity which is typically reverseable through exercise and proper nutrition.

        ps. You have to watch those genetic arguments. As someone who has worked their whole life in drug discovery, it is exceptionally rare to non-existent that a single SNP would be responsible for differences in something as complex as CVD and in the subset of patients with RA. At best you might be able to say there is an association, but I would wager that there are a hundred other genes with a similar association. For this particular study I’m not terribly impressed by their odds ratio increase for the polymorphism. While statistically significant, it is just barely over 1. Don’t for a minute believe it might be causative. Nice to know people are researching it though.

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        • August 19, 2010 at 11:18 am
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          I agree about the complexity of association. That’s what I meant to say. It is more complex and a different animal than other CVD.

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    • August 20, 2010 at 12:10 pm
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      What kind of drugs are you researching? Are they RA related?

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      • August 20, 2010 at 1:31 pm
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        For the past 7 years I’ve been working in oncology drug discovery. I’ve done some work on the TNF/NF Kappa B pathway which is related to the mechanism that some of the biologics for RA use, but I’ve not worked on any specific RA treatments. Interestingly enough, a number of the cytokines associated with RA are also being studied for cancer therapy as inflammation has been implicated in the lierature as being associated with the development of cancer.

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  • August 19, 2010 at 3:44 pm
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    I’m so thankful for finding this site. Lately I’ve thought about asking for a referral to a cardiologist just to see what could be going on. After reading these posts, and realizing more and more that I must be proactive, I AM calling today for an appointment. I have a lot to live for, two children still at home who need me. Thanks Kelly, for helping us take better care of ourselves!

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    • August 19, 2010 at 11:11 pm
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      Phyllis, I hope you do go see the cardio doc or whatever specialist that you need! Your family will be glad you did. Hopefully the news will be good. :rainbow:

      Reply
  • August 19, 2010 at 10:13 pm
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    Will you explain further what is meant by “Less adequate preventive care?” Does this mean prior to diagnosis and the fact that too many of us are diagnosed at the later stages of RA and therefore, the treatments fail us on a higher statistical rate?

    Thank you for all that you do and all that you are! You bless us well and so often.

    Many Blessings in return!

    To The Renewal Of Our Lives, One Day At A Time,
    Anthony

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    • August 19, 2010 at 11:03 pm
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      No, I’m sorry if I confused you. Preventive care in the articles linked to here describes standard health screenings or immunizations used to help identify various serious conditions early enough to treat them. There will more on that in tomorrow’s post. Examples would be cancer screenings or flu shots or regular blood tests to check for signs of heart disease, etc.

      Reply
  • December 4, 2010 at 8:53 pm
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    The Annals of Rheumatic Diseases article by Dr. Gabriel can’t be seen unless you pay a fee. All you have access to is the abstract and that doesn’t say much.

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  • November 9, 2013 at 12:28 pm
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    Kelly, as always, I’m so impressed and grateful that you take so much of your precious time and energy to be a strong voice for all of us.’at 74’in my vintage years, and having struggled w/this dreadful disease for over 16 years, I’ve recently grown to accept the fact that the longevity genes in the women in my family history are running out. So the discussions on mortality rates for RA’ers are very real to me. In fact, I am slowing down so much, turtles and snails are passing me by! The fatigue is so overwhelming I sleep 10-12 hours a day. Imdont use a wheelchair except in airports. I do have a rollator, which is a kind of cute walking device on wheels that has a basket and a seat and folds up. Mine is red and my daughter made a red and black polka dot seat cover for it.
    Anyway, I think the work you are doing for patient centered health care and research is marvelous and I admire your courage and integrity. Thank you, Linda C.

    Reply

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