This is Part 3 of a series on Rheumatoid Disease / Rheumatoid Arthritis pain. In Part 1 we looked at the role of pain in the disease. Part 2 examines a popular study on Remaining Pain and poses 12 reasons that current explanations for Remaining Pain are wrong. In Part 3, we’ll see that the idea of Remaining Pain originates with a misunderstanding of Rheumatoid Disease / Rheumatoid Arthritis pain.
Who has remaining Rheumatoid Arthritis pain?
Remaining Pain refers to joint pain in people living with rheumatoid disease (PRD) who have already been treated with a DMARD like methotrexate. Look carefully at the responses in the remaining pain with methotrexate study.(1)
- 40% of PRD had a good response*
- 35% of PRD had a moderate response
- 23% of PRD had no response
In all 58% reported remaining pain. Who were they?
PEOPLE WITH REMAINING PAIN
- 29% of PRD with good response*
- 70% of PRD with moderate response
- 83% of PRD with no response
“Response” means improvement in symptoms in the EULAR rating system. The first thing to notice is the low response rate. DMARD and biologic response rates tend to be lower than advertised.
Read more on unsatisfactory improvement levels with methotrexate
Second, did you notice that, even if PRD had little or no response to a medicine, they could have “remaining pain”? Is that actually remaining pain – or just remaining rheumatoid? If the medicine didn’t treat their swelling, stiffness, or inflammation, wouldn’t you expect them to still have pain also?
That’s not remaining pain, but remaining rheumatoid disease.
Calling rheumatoid arthritis pain “remaining pain” considers the DMARD as a cure. It’s like I put a coat of white paint on a blue wall and I ran out of paint. Some wall spots were remaining blue. I should not wonder why. They were not painted. Just like a person with RD was not cured.
It’s also possible that some parts of the wall were painted too thin. These parts look light blue because they need more paint. These are like the PRD who need another medication to treat the disease and its symptoms.
Rheumatoid disease / rheumatoid arthritis pain is no surprise
Adding the 35% to the 23% (moderate or no response to methotrexate) equals 58% of PRD with insufficient response. That’s the same percentage that reported remaining pain. They are not all exactly the same people because some from the good response group had remaining pain. But 58% with remaining pain should not surprise anyone. A majority has been inadequately treated. And the same majority still has pain.
There is no surprise because no one was cured. Symptoms remain, even in those with a “good response.” And because RA / RD is a painful disease, pain is one symptom that remains.
It’s not just Rheumatoid Arthritis Pain
Rheumatoid disease / rheumatoid arthritis pain does not occur in isolation as we’ve discussed before. PRD know it’s never “just pain” when they hurt.
But when rheumatologists define “response,” they do not consider the whole disease. Rheumatologists consider what they understand, see, and measure easily. Unfortunately, this does not consider all symptoms or all disease activity. The entire disease is rarely observed or measured.But when rheumatologists define “response,” they do not consider the whole disease. Click To Tweet
Remaining pain is a useless model
The remaining pain study says: “Here, we aimed to isolate the remaining condition of pain in spite of a clinically well-defined good effect of the treatment.” They define a “good effect of the treatment” without regard to a patient’s opinion. Despite any level of pain. And without ever considering the rest of the disease, beyond the obviously swollen joints.
“Remaining pain” implies that the rest of disease activity has been addressed, and only pain remains.
Rheumatoid disease/ rheumatoid arthritis pain is persistent
The study authors speculated that their patients had not been sick long enough to blame “damage” for their pain. I would assert then that they have not been sick long enough to learn “maladaptive coping” either.
Research confirms patients’ experiences with disease activity and pain. CRP does not correlate well with patient’s outcomes, but patient-reported outcome measures do.
Rheumatoid disease should be treated seriously to provide the best care possible and hopefully reduce the mortality rate of RD. No aspect of RD / RA should be assumed to due to maladaptive coping.
Look at a list of just what is Textbook RA compared to what people with rheumatoid disease (PRD) experience in real life. And what the future holds for PRD… Click to keep reading Textbook Rheumatoid Arthritis: Patient Input Will Replace It
I ask detailed questions to pick apart claims of some researchers that millions of people with rheumatoid disease (PRD) actually have low pain thresholds. “Painful as it was to read, I examined the sixty-six footnotes looking for an answer. Many of the articles had footnotes of their own, so it was an infuriating couple of weeks…” Click to keep reading Does Rheumatoid Arthritis Pain Really Hurt That Much?
- Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
- It’s Just Pain, Right? No, Dr. No, It’s Not
- Winter Solstice Lunar Eclipse: Was the Moon Really Red?
* European League Against Rheumatism (EULAR) ratings
(1) A Reem, S Saedis, Wedrén S, Alfredsson L, Klareskog L, Lampa J. Remaining pain is common in early rheumatoid arthritis patients treated with methotrexate. Arthritis Care Res. Jul 22 2016 (68):8;1061-1068. DOI: 10.1002/acr.22790. Online version available: http://onlinelibrary.wiley.com/doi/10.1002/acr.22790/full
(2) Young KO, Symons DM, Lumpe A, Crowson CS. Patient survey regarding utility of the health assessment questionnaire reveals an unrecognized aspect of disease activity in rheumatoid arthritis: consequences of physical activity. Arthrit Rheum Oct 29 2013 (65)10 abstract 2272. Available from http://rheum4us.org/wp-content/uploads/2013/10/Abstract-Poster-HAQ.pdf