Arguments in rheumatology which are critical for patients
Certain issues need to be settled in order to improve patient care for RA. Some things that have been “understood” or taught for years are wrong. These issues lead to inconsistencies in the practice of doctors who care for RA patients.
Some of those issues have been taken head-on here like nowhere before:
Another controversial issue concerns which joints can be affected by Rheumatoid Arthritis. In 2009, we began a discussion What Is the First Symptom of Rheumatoid Arthritis? There are about 900 comments, mostly by patients posting a wide variety of joints and diversity of symptoms. While joint symptoms are often debated, there is one little joint that has been singled out for debate more than any other: the DIP joint.
CAN THE DIP JOINT BE AFFECTED BY RHEUMATOID ARTHRITIS?
And if it can, why do so many say it cannot be?
How I became aware of the DIP RA debate
In 2006, RA moved like perfectly symmetrical dominoes through my body, systematically affecting every joint. For decades, the RA had preferred my feet over my hands (like Ann and others). My hands ached and occasionally joints locked up, but they weren’t terrible – except for the joints down by the fingernails – the DIP joints. Even though swelling was mild enough that it was not noticeable to strangers, dexterity was lost and those DIP joints hurt every day.
My first rheumatologist never challenged me about which joints were affected. She didn’t examine my joints or ever send me for imaging. She used to say it didn’t matter since the Rheumatoid disease is systemic and I already took treatment for it.
At that point, I had only begun to dig into RA research and had no idea that my hands were politically incorrect – or how lucky I’d been to be treated for RA when my hands “looked ok.” When I made an appointment with another rheumatologist in 2009, I was in for a shock. When doctors did not want to even examine RA that did not appear to be grossly swollen from across the room, I started asking questions of other patients and reading everything I could get my hands on about swelling and which joints can be affected. That’s when I traveled to another state to get an ultrasound that would show the RA that affected my hands more every day.
That’s when I met Dr. DIP, who told us (I had 2 chaperones):
- It is impossible for Rheumatoid Arthritis to ever affect the DIP joint.
- The CRP is the only accurate determinant of RA disease activity.
- Ultrasound cannot be used on any joint to examine RA, except for the MCP joints.
That night in my hotel room, I believed he was wrong; I wrote Is There a Typical RA? But not until I’d read some case studies and articles about Rheumatoid Arthritis in the DIP joint. Over the next couple of years, I looked for answers. I knew what my hands said. And I knew what other patients said. But, why would doctors try to tell us something different. How did it get so mixed up?
Historical evidence of Rheumatoid Arthritis in DIP joints
In 1909, Llewellyn Jones wrote that “Rheumatoid disease” rarely causes enlargement (swelling) of the terminal finger joint (DIP). I read about Jones’ work and that of numerous others in “A Study of Distal Interphalangeal Joint Tenderness in Rheumatoid Arthritis.” Some things I learned there:
- Despite various types of evidence to the contrary, the myth that the DIP is not involved in RA has taken hold.
- A vast majority of RA patients are DIP-positive (at least 70%). Or 84% here.
- A high level of inflammatory intensity is usually required before inflammation in the DIP joints becomes evident. “It is theoretically conceivable that all patients will exhibit DIP joint tenderness if disease activity is great enough.”
Examining patients with “fresh” eyes
The authors of the 1966 study wanted to learn why established “facts” did not correspond to what patients experienced. By studying what patients actually experienced, they found answers. “Rheumatoid joint inflammation seems to be a sharply localized process that follows a prescribed pattern in each afflicted individual.” As Dr. Evelyn Hess is quoted in The Rheumatologist, “Every single time you see a patient, see that patient with new eyes and you’re bound to find something new.” Myths and prejudices like the DIP myth can interfere with examining a patient with fresh eyes.
Other articles discussing Distal Interphalangeal Joint (DIP) Rheumatoid Arthritis
- Instructions from The Pain Source for giving steroid injections for RA in the DIP joint (like I had last year).
- A majority of RA patients experienced joint space narrowing in DIP joints.
- “The Articular Involvement in Rheumatoid Arthritis,” New Journal, 2004.
- Johns Hopkins is one of many medical sites that perpetuates the myth that “Rheumatoid Arthritis does not affect distal interphalangeal joints.”
- What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
- What Is the List of Rheumatoid Arthritis Joints?
- What Is the First Symptom of Rheumatoid Arthritis?
- 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me
Edited 8/6/13 to updated number of comments in second paragraph.
Edited 4/3/18 to updated number of comments in second paragraph.