Textbook Rheumatoid Arthritis: Patient Input Will Replace It

Peanuts MetLife sign on Metro A week ago Eric shared his dilemma and asked readers to share opinions concerning the treatment of his wife Kim’s Rheumatoid Disease. He provided the summary of issues he had given their rheumatologist, background about her symptoms, and a summary of the doctor’s response. He then listed questions he invited readers to answer. I have “Tweeted the daylights” out of Eric’s post because it provides such a clear illustration of where rheumatology care is and where patients are today with a diagnosis of “Rheumatoid Arthritis.”

Eric and Kim’s quandary is a prime example of the state of care for Rheumatoid patients – and all chronic disease patients – past, present, and future.

The Past: creating the textbook version of Rheumatoid Arthritis

In preceding decades, doctors crafted what is now known as “textbook Rheumatoid Arthritis.”

Rheumatoid Arthritis is a “form of arthritis.”
Symptoms occur first and primarily in the hands, especially the MCP joints. Conspicuous swelling of hands is used to diagnose the disease.
The effects of the disease are mainly limited to joints.
There is a long list of joints that RA cannot affect.
Spread of disease is gradual and patients lose function eventually.
Rheumatoid factor indicates disease activity.
People with Rheumatoid Arthritis have a low pain tolerance. They exaggerate pain and disability by hypochondriasis, “rheumatoid personality,” (or similar models).

The Present: patients recognize “textbook Rheumatoid Arthritis” is wrong

Patients come together through the use of the internet, realize their similarities and differences, and that “textbook Rheumatoid Arthritis” is actually rare.
Doctors become reliant upon sed rate (ESR) or CRP blood tests to “determine” disease activity.
Patients who don’t fit “textbook Rheumatoid Arthritis” are frequently told they are “atypical.”
Patients who tell doctors that symptoms are not fully relieved by modern medications are told they have Fibromyalgia syndrome, pain processing disorder, catastrophizing, “diminished conditioned pain modulation,” or chronic pain syndrome (or similar models).
Evidence continues to accumulate for musculoskeletal activity in Rheumatoid disease beyond conspicuous visible synovitis, including bone marrow lesions, tenosynovitis, osteitis, and many other –itis’s.
Well-informed patients know various definitions of Rheumatoid disease activity or remission, as Eric described, and recognize whether they apply.
Evidence shows Rheumatoid Disease exists before joints are affected and beyond joint activity, to heart and lung disease and more.
Some doctors are frustrated by patients who engage and ask questions about tests, treatments, or symptoms because they have read articles on “the internet.” Other doctors continue to explore and learn.

The Future will reveal a more accurate grasp of Rheumatoid Disease

What patients report is becoming integrated into the knowledge base of this disease. With hundreds of blogs, dozens of symptom-reporting apps, and finally a Rheumatoid Patient Foundation, the conception of the disease will be updated.
The advent of patient-centered outcomes research will transform the disease paradigm as patients have input through all stages of the research process. (See PCORI posts.)
We learn more about Rheumatoid Disease every day. For example, this week we learned that Rheumatoid arthritis treatments separately affect structural damage and clinical disease activity.
Newer tools are created such as musculoskeletal ultrasound but few doctors being trained to use them to discern Rheumatoid disease activity and even fewer recognizing the vast subtleties of their use.
The textbooks will be re-written as patients finally communicate to the world and the medical community about the physical particulars of the disease.
A physical disease process will one day be acknowledged and documented for every physical symptom of the disease. And then treated.

Older Rheumatoid patients tell me that before there was CRP to tell doctors that patients are in remission or television commercials and drug reps to tell doctors that medications relieve all symptoms, doctors were more likely to believe patients’ symptoms. Of course, back then there were also those who believed the myth they themselves fashioned of The Rheumatoid Personality. Hopefully, people who are Rheumatoid patients will have enough input in the future to see that care improves substantially and permanently.

I love reading letters from patients. However, I look forward to the day that thousands of patients will NOT write me letters telling me their doctors think they are depressed, overtired, exaggerating, or misdiagnosed because they don’t look swollen enough while in the office to be experiencing the disease activity that they describe.