What Causes Rheumatoid Arthritis Damage? | Rheumatoid Arthritis Warrior

What Causes Rheumatoid Arthritis Damage?

The sabre rattling of Rheumatoid Arthritis damage

Do you ever look down at the invisible stabbing pain and wonder what’s going on inside your joints? Do you wonder whether damage is occurring when you feel your joints sticking or twisting or popping? Or red or puffy?

What exactly causes Rheumatoid Arthritis damage? Over the years, some have supposed it is correlated with the Rheumatoid factor or the anti-CCP. Many rheumatology doctors were taught to rely strictly upon ESR / sed rate or CRP for measure of invisible disease activity. Most textbooks say that synovitis (swollen, thickened synovium) is responsible for bone erosions while others more specifically blame immune cells called cytokines which are produced there.

I don’t think anyone knows yet exactly how various types of damage happen or how to predict or prevent Rheumatoid Arthritis damage in spite of what some lovely hospital sites say. There is evidence of it occurring before there is much pain or indication of disease activity. There are even examples of high blood test markers and modest damage. There are trends, but little substantiation.

How many times have we heard a rheumatology doc say “disease activity is low” based on a blood test? That’s often the point when people look for answers online and write to me saying, “Now what do I do?” Are all of our joint symptoms just sabre rattling if a blood test says so?

Clues to Rheumatoid Arthritis damage?

You know the old saying about how you can tell some people are lying? Their lips are moving. Well, it’s true of RA, too. There’s one definite way to know that Rheumatoid Arthritis damage can occur: by having it. If you have RA, then it is probably damaging you. Think of RA as a liar whose lips are moving even when it whispers.

  • This month at EULAR, a study was presented which demonstrates that CRP is not as important as actual clinical measures (Ann Rheum Dis 2010; 69). In this study, clinical measure was swelling. Swelling, of course is subjective; my current rheumatology doctor can detect swelling that another one could not. Of course, that previous doctor examined me from the other side of the room. Obviously, this clinical method of detecting disease activity requires expertise some rheumatology docs don’t have.
  • It is believed that inflamed synovium (that thickening that a good rheum doc can feel) produces more immune cells that destroy bone and cartilage tissue. However, surrounding muscles, tendons, and ligaments can be suddenly weak and allow for unnatural loosening of a joint. I have not found a good explanation of what causes this weakness. (See NIH explanation of what happens in Rheumatoid Arthritis.)
  • Inflammation is not everything. There is proof that muscle loss continues even after inflammation markers improve (2009, Arthritis Research and Therapy). “Rheumatoid cachexia may be an important risk factor for cardiovascular disease and excess mortality in RA.”
  • A 2006 study found that certain “biomarkers of cartilage collagen and proteoglycan turnover” are related to RA damage. Other collagen biomarkers are not. “Specifically, C2C (the marker for collagen type II damage) could predict subsequent short-term as well as long-term radiographic damage in RA, and more specifically joint space width narrowing” (Arthritis Research and Therapy).
  • Last year, some researchers found that “MRI bone edema, representing osteitis, has been further implicated as a forerunner to bone erosion” (Arthritis Research and Therapy). So bone inflammation precedes erosion. Is that why my joints look bigger? Hope not.

There are definitely some pieces to this puzzle missing. I guess the more we know about how they fit together, the better our chances of stopping Rheumatoid Arthritis damage. We need to study the picture on the box lid some more: the RA patient.

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:/rawarrior.com/kelly-young-press/

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26 thoughts on “What Causes Rheumatoid Arthritis Damage?

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  • June 30, 2010 at 7:38 am
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    Once again, Kelly, you have helped me understand all the blood work they do. I tried just yesterday to explain why it had been so hard for the Dr. to diagnose my RA to some friends-Now, with the help of this information I can do a better job. You are such a great help. Thank you so much.

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    • June 30, 2010 at 9:01 am
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      Hi Kristi, did you read through the links about blood tests on the Do I Have RA page or using the tags list dropdown at page top. If you do have questions, there’s a lot here. Prob. more than you want to know. LOL 😛

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  • June 30, 2010 at 9:45 am
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    My RF is seronegative. My bloodwork always comes back on the high side of the normal range for inflammation. However, I just had to have an xray done of my foot due to an injury and the ER dr compared this xray to ones done last summer. He said I have “significant arthritic changes” in my foot as opposed to last year’s xrays. I have been on Remicade since August and MTX since April a year ago. So much for bloodwork being an indicator of disease activity!

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    • June 30, 2010 at 9:47 am
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      I’m sorry to hear about the new foot damage, Phyllis. But, yes, you’re right. Rf just doesn’t predict it or reveal it. Thanks for sharing your details so others can see.

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  • June 30, 2010 at 10:50 am
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    hey there… i have no blood tests that are irregular..just once in the hight of the initial flare.. crp very very up.. but the pain is more now than at that time.. and in more places.. and more stabbing than crushing/tight. There are changes that were there according to my podiatrist that represent RA before i realized that “sudden severe flare” that identified me as an RA patient..
    I didnt feel the RA deterioration in my foot.. yet it was evident on xray.
    Darn this sneaking little rascal (RA) .. it is Eons Old.. but it acts like a 2 year old lol

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    • June 30, 2010 at 1:15 pm
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      Excellent info for anyone searching Dianne. Delivered w/ humor just how I like it. :yes:

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  • June 30, 2010 at 1:34 pm
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    Had to laugh at the statement on the hospital link that said: “The rate at which new advances in care are occurring in RA is mind-boggling!”

    It sounds exciting to have RA doesn’t it??

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  • June 30, 2010 at 6:42 pm
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    I am also seronegative. My RF and ESR are always normal. Once I had an elevated CRP, but I was also sick at the time. The last time my RF and ESR were tested, I literally had burning hot claw hands. In addition, it felt like hot daggers were being twisted into my hips 24/7. Oh, and my feet were stiff, puffy and had stabbing pains in the base of the toes. And still, all “tests” were normal. In my experience, the blood tests have no correlation to the pain.

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    • June 30, 2010 at 8:09 pm
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      Or possible to the damage done as well. What did your doc say about that?

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      • June 30, 2010 at 9:53 pm
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        You’re right Kelly. I often wonder about the damage that has already been done. So far, I’ve had MRIs of the spine and hips, and neither showed any damage (despite significant hip and back pain). I can only imagine what an MRI of the hands/feet/wrists would show. The hip pain was confirmed to be trochanteric bursitis rather than hip joint pain. I’ve done alot of research on bursitis, and it is definitely related to RA.

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  • June 30, 2010 at 8:45 pm
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    Thank you so much for this article, Kelly! I have something else to talk to my rheumy about at my next appt. I now understand why my last rheumy was so slow to do anything – he always talked about my blood work looking good – but I kept showing him the inflammation and telling him how much pain I was in. He took me off meds, the new rheumy has put me on much – irregardless of the test results.

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    • June 30, 2010 at 9:01 pm
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      Good luck with your apptointment, Janel. You can click on the orginal studies to print if you like so you don’t have to say, “I read this on a blog”.. LOL.
      Don’t you think it can be an extra source of frustration – like we need more on top of pain, meds, lack of awareness… ? :no:

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  • July 1, 2010 at 12:27 am
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    My favorite is a grinding noise I hear in my elbow when it gets stuck or stiff, and I have to push through it to get it to go the “full” range of motion (full is a very relative word in this case). It sounds like metal in a blender is the best way for me to describe it…..thanks for another insightful post, Kelly.

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  • July 1, 2010 at 1:31 pm
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    I love the information you bring, but I have to say I love your humour more! Just looking over my records today, in preparation for a move and a change in Rheumatologists – my two prior docs have been focused on swelling. Now I know one aspect of what to look for in my new doc.

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    • July 1, 2010 at 1:36 pm
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      THANK YOU ANJ. Glad you get it. :heart: Good luck w/ that new doc! I hope this is a positive move for you.

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  • July 1, 2010 at 2:32 pm
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    I wish I could understand more of the medical jargon from these studies, but I do understand some and it helps how you summarized it all. It would be interesting to know if we have this C2C that continues to cause joint damage, and what genetic markers we have also. It makes sense to me now how I am feeling continuous joint damage inspite of my success with mtx and enbrel. My right shoulder specifically, felt normal at diagnosis and has been getting worse as the months go by. It also possibly explains my continued weight loss and muscle loss (REE and FFM). Unless I read it wrong. No wonder I’ve been so confused over what I feel compared to what docs and the hospitals say. So much of what the hospital link says is incorrect. Such as we have safe and effective drugs. They have no idea whether biologics are safe long term. Different sites contradict each other also, which leaves RA’ers even more confused! Thanks for this very interesting and informative post.

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    • July 1, 2010 at 2:56 pm
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      Ronda, it is great to have such smart friends as you. I try to make it sound easy & funny, but it is certainly tedious. & Yes, no wonder people are confused with things like that hospital site. I now have a list of “big & credible” sites like that which are plain wrong. 😛

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  • September 24, 2010 at 9:48 am
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    Kelly The only thing my rhemy says is It doesnt look bad! What does that mean? I sit there screaming inside with pain and i hear that..She has never shared any numbers with me..Im learning from you and this site! Thanks for this site or i would have gone crazy along time ago! Well some would say i have already..lol Judi

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  • September 20, 2011 at 5:13 am
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    i was dx 4yrs ago with R.A and S.S i already have had an operation on my knee and when i woke up my doctor casually said, were sorry but we cant always see everything on the MRI and you are going to need a knee replacement. As he left the room i balled my eyes out.I think i realized then that this was only the beginning of things to come. I have already developed nodules in between my fingers. The last few test that i have taken has come back saying that my crp rate is high . i am very worried because obviosly we cannot see whats going on in the inside of our bodies and i thought the thing that causes the dammage is inflammation. Would love to hear back from someone that has some knowledge of this because my rhumy seems to take everything in stride and i am honestly scared of what may be going on in the inside. Thanks and my prayes go out to all of you with this awful disease. xoxo

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  • August 25, 2014 at 1:34 pm
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    Hi did you mean muscle loss? I’m certainly not cache xoco!! Thanks for another great article ann

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  • May 22, 2015 at 7:36 pm
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    I have a great biologic rheumatologist who doesn’t even do the blood tests to verify disease activity. He bases it on how I am feeling, responding, swelling and pain levels. I haven’t found the sweet spot in meds yet but we are getting closer. My pain levels are manageable and my ability has greatly improved – can do most everything now with only slight limitations.. could not even wash my face without pain prior.

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  • May 22, 2015 at 7:37 pm
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    I should point out I get blood work done regularly but that is not used to assess my overall situation..

    Reply
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