What is Rheumatoid Arthritis?
All of the other questions about Rheumatoid Disease (RD) hang on this. After we truly know what it is, we can diagnosis it early, treat it successfully, and cure it!
Remember the ancient elephant story? Just like the blind men describing the elephant, numerous aspects of RD have been described, but a comprehensive picture has not been recognized.
The wrong answer: Rheumatoid Arthritis (RA) is a type of arthritis that mainly affects the hands. The synovial membrane becomes inflamed, eventually causing bone erosion. Later, RA can affect other joints or cause disability in some cases. Rarely, the disease affects a person’s health in other ways.
The problem: Most people, including most doctors, still believe that. Even new young doctors are still being taught to measure the disease by glancing at the top of the hands. It’s hard to believe we are still diagnosing a systemic disease that can begin anywhere in the body by a doctor’s subjective opinion of conspicuous swelling on the back of the hands (synovitis).
In 2006, A.K. Brown showed that 96% of RA patients judged by rheumatologists to be in remission actually have active disease. Yet this summer at EULAR, it was still news when a doctor reported his results that “raging inflammation” exists when doctors don’t see “clinical symptoms” (conspicuous swelling).
We don’t know exactly how Rheumatoid Disease works yet, but scientists have learned that only 32% of “the joint destruction level in RA is explained by the currently known risk factors.” It’s not all synovitis. It’s not all conspicuous swelling. It’s not all Rheumatoid factor or CRP. So, what is it?
So what IS Rheumatoid Disease?
I hope my upcoming book will make a big impact on this question. Meanwhile, check out the new RAW “facts and information on Rheumatoid Arthritis” section with 10 key points on RD, a list of common myths, key medication facts, and more. A special section for healthcare professionals is coming soon.
We know that it IS a painful complicated disease. And that joint inflammation (arthritis) is one symptom. We know that a disruptive immune response causes systemic inflammation that can attack any part of the body. And that it is extremely heterogeneous; likely my friend Bob is correct that there are sub-types of RD.
Seeing should mean believing
With all the treatment my neck has had from other doctors, I’ve never had my neck examined in any way by a rheumatologist. Of course I’ve asked about it every time. Last month my friend Carla asked me about it and she was surprised, saying, “I hoped something would change by now.” Carla’s book describes her mother’s Death by Rheumatoid Arthritis due to its effect on her spine, unrecognized by her doctors.
“You can’t use a nuclear bone scan in RA. It doesn’t ever work because that’s not what it’s for.” Strangely, those words Dr. Smart told her manager to tell me still haunt me – even though a competent radiologist finally read my bone scan. Could bone scans (scintigraphy) not be real? How could the rheumatologist not know?
And THEN reading the new EULAR imaging guidelines, I noticed a section called “Scintigraphy”! It seems scintigraphy is as real as the noises in my neck!
10 things it doesn’t make sense if doctors don’t know
- There’s a long list of symptoms other than synovial swelling.
- Tendons or other “soft tissues” are affected by the disease (see other tendon study here). Understand the true prevalence of tenosynovitis that is proposed to be the first manifestation of RA.
- A surprising neglected joint (sternoclavicular) where patients have painful symptoms.
- 10 denied joints that are commonly affected (DIP).
- Guidelines for disease care should include extra-articular disease.
- Doctors should be aware that current research shows cartilage loss is more significant than bone erosions.[6,7]
- Doctors should not rely on blood tests to diagnose or judge Rheumatoid disease activity since that has never been correct and there have always been a large percentage of patients with “normal” blood tests.
- Research should follow clues from people who live with the disease.
- It’s sad when doctors don’t understand how bad RA hurts – even in kids.
- A failure to have a comprehensive grasp of RD harms patients.
- Textbook Rheumatoid Arthritis: Patient Input Will Replace It
- Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
- Where the Rubber Meets the Road or What If Only the Cancer in Dave’s Kidneys Was Treated?
- Can We Treat the Whole Person or at Least the Whole Disease?
- What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?
- Does Rheumatoid Arthritis Affect Tendons?
1 Brown AK, Quinn MA, Karim Z, Conaghan PG, Peterfy CG, Hensor E, Wakefield RJ, O’Connor PJ, Emery P. Presence of significant synovitis in rheumatoid arthritis patients with disease-modifying antirheumatic drug–induced clinical remission: Evidence from an imaging study may explain structural progression. Arthritis Rheum. 2006 Dec [cited 2013 Aug 3];54(12):3761–3773. Available from: http://onlinelibrary.wiley.com/store/10.1002/art.22190/asset/22190_ftp.pdf?v=1&t=hjwu6cbq&s=a90ec1f341093085e7bb0dcffdf8e1d5cf8179c7
2 Zoler ML. Ultrasound speeds new RA diagnoses. Rheumatology News [website]. 2013 Jul 11 [cited 2013 Aug 3]. Available from: http://www.rheumatologynews.com/specialty-focus/rheumatoid-arthritis/single-article-page/ultrasound-speeds-new-ra-diagnoses/
3 de Rooy DPC, van der Linden MPM, Knevel R, Huizinga TWJ, van der Helm-van Mil AHM. Predicting arthritis outcomes—what can be learned from the Leiden Early Arthritis Clinic? Rheumatology (Oxford). 2010 Jul 16 [cited 2013 Aug 11];50(1):93-100. Available from: http://rheumatology.oxfordjournals.org/content/50/1/93.full
4 Colebatch AN, Edwards CJ, Østergaard M, van der Heijde D, Balint PV, D’Agostino MA, Forslind K, Grassi W, Haavardsholm EA, Haugeberg G, et al. EULAR recommendations for the use of imaging of the joints in the clinical management of rheumatoid arthritis. Ann Rheum Dis. 2013 Mar 21 [cited 2013 Aug 3]; Recommendation. Available from: http://ard.bmj.com/content/early/2013/03/20/annrheumdis-2012-203158.full
5 Hmamouchi I, Bahiri R, Srifi N, Aktaou S, Abouqal R, Hajjaj-Hassouni N. A comparison of ultrasound and clinical examination in the detection of flexor tenosynovitis in early arthritis. BMC Musculoskeletal Disorders. May 8 [cited 2013 Aug 11];12:91. Available from: http://www.biomedcentral.com/1471-2474/12/91
6 News-medical.net [website]. Study: More attention needs to be paid for cartilage during RA diagnosis. 2011 Aug 23 [cited 2013 Aug 11]. Available from: http://www.news-medical.net/news/20110823/Study-More-attention-needs-to-be-paid-for-cartilage-during-RA-diagnosis.aspx
7 Aletaha D, Funovits J, Smolen JS. Physical disability in rheumatoid arthritis is associated with cartilage damage rather than bone destruction. Ann Rheum Dis: Extended Report. 2011 Feb 14 [cited 2013 Aug 11];70:733-739. Available from: http://ard.bmj.com/content/70/5/733.full