Rheumatoid Symptoms Persist Despite Treatment: a Study in Juveniles (JRA / JIA)

funny-saying-jarsIn spite of treatment advances including biologics, children affected by Rheumatoid Disease still experience pain, stiffness, and fatigue that impacts their ability to function. The disease may not be as “controlled” as many doctors presume. This may not be news to you as a patient or caregiver, but as these researchers point out, it needs to be recognized to improve clinical care and research.

Disabling pain, fatigue, and stiffness typically continue even with aggressive treatment

A study in North Carolina with 59 children diagnosed with Juvenile Idiopathic Arthritis (JIA) reported symptoms over one month using an electronic diary (e-diary).[1] Diary entries included rating intensity of pain, stiffness, and fatigue, as well as functional limitations, three times a day. Five points will help highlight the significance of this study.

1) The symptom reports in the e-diaries

Pain was reported on 66% of all diary entries. No children were pain-free. High pain intensity was reported on 31% of all diaries, with 86% reporting high pain at least once. Averages of all entries (pain, stiffness, and fatigue intensity) were in the mild to moderate range.

2) “In-the-moment, higher pain and stiffness intensities uniquely predicted higher concurrent functional limitations.”

The researchers learned that it is important to consider not only a pain intensity score, but also the number of painful locations when predicting how a person with Rheumatoid Disease (PRD) can function. “The number of painful body locations reported at any given time predicted functional limitations at that time, above and beyond the effects of pain intensity, t(3039) = 8.44, p < .01.”

Ditto for stiffness.

IF THIS ONE FACT WERE RECOGNIZED, IT WOULD IMPROVE CLINICAL CARE DRAMATICALLY.

3) Biologics were not better than DMARDs

The researchers failed to detect significant differences in symptoms based on medication class. “Medication class did not reliably predict differences in symptom intensity even though 79% of children were prescribed a DMARD and 47% a biologic.” The exception was that children using scheduled NSAIDs had lower fatigue intensity ratings.

4) Disease activity is not controlled by modern treatments

THIS POINT IS OBVIOUS TO ANYONE OBSERVING THE #RHEUM COMMUNITY OR COMMUNICATING WITH SUPPORT GROUPS FOR KIDS OR ADULTS WITH RHEUMATOID DISEASE (RD); I’VE MENTIONED IT IN EVERY SPEECH I’VE GIVEN.

“However, these results raise new questions about the effectiveness of contemporary aggressive therapy in preventing or limiting disease symptoms. Moreover, disease activity may not be as well controlled as presumed by health care providers based solely on physical examination and laboratory assessment.”

5) Pain, stiffness, and fatigue intensity should be assessed routinely

The researchers concluded that routine assessments of symptoms experienced by juvenile Rheumatoid patients should be included in both routine clinical care and in assessments of treatment efficacy in clinical trials.

Adult studies with similar results

A Rheumatoid Patient Foundation (RPF) survey confirmed most adult PRD live with RD symptoms, despite treatments: “Only 8 percent of respondents stated that their symptoms were completely relieved by DMARD or biologic treatments, while 36% of patients stated that they continue to live with a lot of symptoms regardless of any treatments.”[2]

See also: the 2013 Swedish study on “remaining pain.”

Postblog: I get excited when I see studies that confirm what patients and caregivers have always known and often attempted to communicate. For about five years, RAW has sought to address gaps between the reality of RD and what is often taught and believed in rheumatology. As a mom, I hold in my heart families of young people living with Rheumatoid Disease (YPRD) who have contacted me because they were dismayed to experience symptoms despite treatment or face doctors who do not understand it.

Rheumatoid Awareness Day is just two weeks away – February 2.

This year patients and organizations across the U.S. and in other countries are observing the second ever awareness day for RD. For updates on RPF sponsored Awareness Day events – click here. If you have a blog of any kind, please join our special blog carnival – What Would Rheumatoid Awareness Mean to You?

FOOTNOTES

1 Bromberg MH, Connelly M, Anthony KK, Gil KM, Schanberg LE. Self-Reported pain and disease symptoms persist in juvenile idiopathic arthritis despite treatment advances: An electronic diary study.  Arthritis & Rheumatology [Internet]. 2013 Oct 3 [Accepted article cited 2014 Jan 21]. Accessed from: http://onlinelibrary.wiley.com/store/10.1002/art.38223/asset/art38223.pdf?v=1&t=hqpyz4kz&s=31bdc1f80829d7755d389b30da70b61f4195fb55. DOI 10.1002/art.38223

Link to abstract: http://onlinelibrary.wiley.com/doi/10.1002/art.38223/abstract

2 Rheumatoid Patient Foundation. Unmasking rheumatoid disease: the patient experience of rheumatoid arthritis. A white paper from the Rheumatoid Patient Foundation. Rheumatoid Patient Foundation [Internet]. 2013 Apr 20 [cited 2013 Aug 3]. Available from: http://rheum4us.org/wp-content/uploads/2013/04/Unmasking-Rheumatoid-Disease-The-Patient-Experience-of-Rheumatoid-Arthritis-White-Paper.pdf

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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/

5 thoughts on “Rheumatoid Symptoms Persist Despite Treatment: a Study in Juveniles (JRA / JIA)

  • January 22, 2014 at 12:02 pm
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    So do we continue to take these drugs with horrible side effects, for minimal relief???? That is my question to self every single day of my life. Especially days like today when the MTX is making me so sick, and I still hurt so much.

    Reply
    • January 22, 2014 at 3:24 pm
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      Rebecca- I hope the following info. will help you as it has me and several of my friends. It is a very cheap and simple approach to relieve inflammation, fatigue, and bring your body back to it’s normal Natural functioning. Believe me when I tell you that I was a HUGE skeptic, until I throughly researched and tested the practice of ‘EARTHING/GROUNDING”!I had great difficulty in using my hands,knees,shoulders,and was always extremely tired/fatigued. After 4 doctors I was diagnosed with “severe RA. and was put on prednisone and metho. shots.A year or so later I STUMBLED upon “The Book” which explained this simple task to cure inflammation, fatigue and many other chronic symptoms our body is subject to as we age. Presto- after the first half hour I felt a big difference in my RA. and 2weeks later I was about 75% cured!! It has been a month now and I would say I am 95% better
      – a real mircale for such a skeptic. MY wife who suffers with “Fibromayalgia” has gotten great relief from her muscle pain, fatigue and SLEEP depervation. I now get my shot only once a month! You should go to ‘Earthing.com’where you can now LISTEN to ‘The Book” and get aquainted with the process. I have no vested intrested in the company or products they sell,I just want to help others as I have helped myself. I just awoke one day unable to open my hands fully and unable to walk down stairs. It was an all of a sudden thing. I am a person who has to find answers for things so I began to read all I could.When I was on the Amazon.com site looking for more books,I noticed “The BOOK”- Earthing-the greatest health discovery ever? One of the authors was a world renown cardiologist located in the town over from me. I had been aware of him so bought the book. The rest is history for me. I earth/ground for half an hour each day. It is so simple yet it works. If I miss for 3-4 days I can litterally feel the symptoms start to return. It reminds me to keep grounding. I have written to Kelly but have had no reply. Good luck.

      Reply
      • January 22, 2014 at 3:55 pm
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        Thanks for the information Rick, I will look into it right now. I’m excited to try something/anything to feel better.

        Reply
        • January 23, 2014 at 11:46 am
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          Thanks for this reminder! I’ve had this on my list of things to try for so long I forgot. I’m going to look into it right now. I’m so sick of feeling sick.

          Reply
  • January 23, 2014 at 12:48 am
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    I was one of those kids dx with JIA (age 10), and I can tell you, even though there were no biologics then, and I’m on biologics now, the pain and flares throughout the past few decades have remained fairly similar.

    Having been the kid with JIA, I can say that kids don’t have the words or life experience to explain the pain. Many times it was more awful than anything I experienced as an adult (except postpartum flares, those were about the same). Kids just get on with it, and take it as a ‘new normal’. We know how flexible kids are to dealing with new situations. I think healthcare providers can look at a kid who seems to be doing well, and completely underestimate the impact of the disease because the child has adjusted to the ‘new normal’.

    Reply

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