2 Reasons Monitoring Rheumatoid Arthritis Matters

This is the second in a short series of posts in honor of the blog’s 2nd birthday. We are looking at some significant topics that have surfaced over the last two years. I’m calling these “frying pan posts” since these issues are critical enough to patients to speak rather bluntly.

Why monitor Rheumatoid Arthritis?

You have your RA diagnosis. You got treatment. Why would you need more tests?

radar gunThis is a common question that comes up in various forms. The question is based upon naiveté about Rheumatoid Arthritis. Regular readers or anyone living with RA knows of the lack of insight about what RA is, even in the medical community.

RA is a chronic, systemic, progressive, destructive disease. None of that would matter much if there were a cure. However, since no cure is available, and treatments are only modestly successful in a significant percentage of patients, monitoring Rheumatoid Arthritis is required to preserve as much health and life as possible.

1) We must treat people, not diseases

Let’s use monitoring a childhood illness as a simple demonstration.

  • If my son gets a cold, I might give him juice, vitamin C, and rest.
  • If he begins to cough, I may add cough suppressant to his treatment.
  • When he cries that his ear hurts, I can take him to our pediatrician who observes an inflamed eardrum and prescribes an antibiotic.
  • At this point, if my son spikes a fever, I’ll take his temperature and administer ibuprofen.
  • At no point in time would anyone suggest that I tell my son that since he has been treated for his malady, he does not need further care. I will continue to treat both the symptoms and the causes of his illness for as long as they exist.
  • And if his eardrum is damaged, despite conscientious medical care, I’ll continue to care for him, even if it requires surgery or a hearing aid.

Disease treatment is sufficient for Rheumatoid Arthritis only if a patient responds exceptionally well. Reliable sources say only six percent of people with RA get remission. Clinical trials for biologic treatments consistently have shown only 20% reach an ACR 70 (70% improvement). Every RA patient ought to be monitored because they are at risk for numerous effects of RA such as bone erosion, spinal instability, osteoporosis, heart disease, and eye or lung problems.

When RA patients experience any loss of function or pain or any secondary diagnosis to RA, these matters must be addressed regardless of the patient’s apparent response to treatment. Patients must receive adequate monitoring to promote timely treatment, especially with regard to symptoms they experience.

2) Treating to target necessitates monitoring

There has been recent interest in treating Rheumatoid Arthritis to target since it has been useful with other complex diseases like diabetes. There also are newer more stringent definitions of Rheumatoid Arthritis remission.  While groundbreaking, none of these approaches reach patients without thorough and regular monitoring of RA disease activity.

A recent article by Smolen and Aletaha discusses methods of Monitoring Rheumatoid Arthritis, concluding that:

“The data presented provide compelling evidence on the importance of monitoring patients with RA clinically at regular and tight intervals throughout the course of their disease, including remission. This monitoring allows not only optimization of the outcome by the treat-to-target approach, but also detection of flares during remission and timely re-introduction of DMARD therapy.”

Discrepancies between perceptions of disease activity, pain, and functional status have all been documented and affect treatment decisions. This systemic problem could be partially addressed with consistent standards for monitoring. Much knowledge could be gained about Rheumatoid Arthritis if more patients were monitored as described by Smolen.

Recommended reading

I urge you to read or re-read the first post in this series, Rheumatoid Arthritis Swelling, Take Two, with images of internal swelling. If we can encourage a clearer understanding of these issues, it could bring dramatic improvement in the care of people with RA as well as diagnosis and study of the disease.

New Rheumatoid Arthritis Remission Criteria

Using CRP in Criteria for Rheumatoid Arthritis Clinical Trials

Note: Interpretation of tests, problems attaining tests, and need for better tests to monitor Rheumatoid Arthritis are all important topics for discussion and will be the subject of other posts.

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/

17 thoughts on “2 Reasons Monitoring Rheumatoid Arthritis Matters

  • June 7, 2011 at 8:51 am
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    I loved the use of the ear infection. Everyone should be able to understand the process.

    Reply
    • June 7, 2011 at 9:00 am
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      right Tanya, who would tell someone with any other illness process to give up trying to be well as possible?

      Reply
  • June 7, 2011 at 10:49 am
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    I think your information is very helpful and wanted to thank you. I am also working with an aquatics therapist that has been helping me. can you please let me know what you think about the type of therapy I am currently receiving aquatic therapy

    Reply
  • June 7, 2011 at 12:15 pm
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    I have actually started a journal over the last two weeks where I document my symptoms, use of medications, and anything else ralated to my RA two to three times a day. Reading back now after finally having compiled enough days has been really interesting to me and I intend to email it to my rheumy a couple of days before my appt and bring in a copy next week. I also loved the ear infection use…. Totally makes sense!
    Thanks again Kelly!!!!!

    Reply
    • October 13, 2011 at 7:58 am
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      Thank you for all the information describing this disease.My doctor gave me a prescription for humira.It is so expensive.I had to pay 33% where the insurance paid the rest.I did get help from the health well foundation.They paid for 3 injections and I tried the Abbott patience assistance foundation and couldn’t get any help after giving them al the information they required.I wonder how many out there has had this problem.

      Reply
  • June 7, 2011 at 2:31 pm
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    I have found that my doctors don’t seem to be concerned with other autoimmune diseases and monitoring for that when symptoms arise. For example, I already have 2 autoimmune diseases, one is rare in general, but even more rate to be diagnosed at my age.

    How do we handle this without sounding like hypochondriacs?

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    • June 8, 2011 at 11:20 am
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      Katie, I do identify with you. I have had Primary Addison’s Disease for 42 years. It is a chronic, rare (1 in 100,000), autoimmune disease where the body shuts down the adrenal glands. The treatment for it is steroids. Since I’ve been on hydrocortisone for this disease for over 40 years, when I started complaining about joint and muscle problems, I was told by several doctors that it was just the long term use of cortisone. It took 4 years to finally get a diagnosis of RA. Unfortunately, when it was diagnosed, the RA is in the severe stage. There is no information for me to know how much extra adrenaline a non-Addisonian body would produce to handle the day-to-day demands of RA or how much extra adrenaline is needed when taking infusions or RA medication.
      Thank you for adding this to the list. I’ve wondered if there were any others who shared a problem like mine. I’m sorry to hear that you are in the same category as I am……….

      Reply
  • June 7, 2011 at 8:11 pm
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    I am soooo saddened that in 2011 we have to have these discussions at all. Something is dramatically wrong in our medical communities, pharmacutical companies and FDA if by now we have to beg to be monitored, have numbers tweeked on drug studies to improve the marketability of a drug and an agency that in my humble opinion has become worthless. Sad is an understatement. It seems to me that the patient is the last one getting attention here in the US and I personally believe it is a numbers game…the almighty dollar that is! Sad indeed. Unfortunately they are playing with our lives. Great post!

    Reply
    • June 7, 2011 at 11:00 pm
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      And it’s not just patients, I really think it’s rheum patients. There is so little money, research, or attention for rheum in comparison to other serious diseases. Leading to little progress in understanding.

      Reply
      • September 16, 2011 at 10:17 am
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        your right Kelly, I believe that many rheum patients feel well the docote knows best so why should question him. It is our duty to our bodies and life that we should research and be knowledgeable about our disease and treatments and question the doctor for clarity.

        Reply
    • September 16, 2011 at 12:05 pm
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      No. I’ve been on Humira but it didn’t work. At the moment, I’m just on methotrexate.

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    • September 16, 2011 at 12:10 pm
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      With such shockingly low remission numbers, I’m wondering why my rheumy is so perturbed that I’m not responding “as expected.” At one visit, he says that axial involvement (spinal, or in my case sacroilliac) doesn’t always respond to meds. Another time he tells me that maybe the MTX isn’t working because my S-I is still hurting, even though it has helped my peripheral joints. I guess with no swelling and only a positive RF, he feels a bit in the dark. You and me both, doc. But even thought it’s irrational it sure makes me feel like a “bad patient” when my body doesn’t know it should be responding to meds the way he expects. 😉 Grateful, though, that he is willing to treat without the “magic” numbers in my blood work.

      Reply
      • September 16, 2011 at 12:11 pm
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        Whoops! That was supposed to be a separate post, not a reply to Debby. Loose nut on the computer . . .

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      • September 16, 2011 at 7:58 pm
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        whenever I read a comment like this, my jaw always drops. some folks were posting last week on Twitter about how their docs told them the same things – my doc said those things to me & made me feel like I’m the only one to not respond. Stayed on double dose of Humira 2.5 yrs waiting for it to work and doc kept saying “most people get better…”

        On the swelling issue: do you know there are well over 300 comments on the swelling posts here? and I’ve read about 5 times that many via Facebook or email that reflect the same issues – doctors tell patients swelling is expected with disease activity, but patients know that swelling comes and goes – not always w/ other symptoms.
        Like you said, at least you are getting treated. Some can’t get that. Best to you Kris.

        Reply
  • September 30, 2011 at 1:58 pm
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    I’ve always wondered why feet/ankles were ignored. For one, it takes extra time. For two, I guess the docs don’t want to deal with smelly, gross feet. Interesting how my docs responded to feet but I won’t go into that right now. But consider the following abstract and how it would fit into treating to target. Although another abstract I read recently said (in relation to guidelines on prescribing of dmards) that docs did not pick up on and change their prescribing habits after the issuance of the new guidelines.
    http://www.ncbi.nlm.nih.gov/pubmed/21953347

    Reply

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