The Varieties of RA Experience
What I have really come to appreciate since being involved in the RA community is how different the experience of the disease can be for people. Some are diagnosed with juvenile rheumatoid arthritis (or JIA) at a young age, some are diagnosed later in life, and others are diagnosed somewhere in-between. Women develop RA at almost double the rate as men, and the disease spans the globe, affecting an approximate 24 million or more people (.3-1% of the population).1
Further, not everyone responds to the same drugs, at the same dose, or at all. Some find dietary restrictions helpful, and others find that diet makes no difference. Some can exercise, with a range of tolerable intensity, and others cannot exercise at all for a variety of reasons. Some of us prefer cold, others heat, and it seems like many (but probably not all) can't stand the humidity. Many suffer from mind-numbing fatigue and brain fog, and others do not have these symptoms. It is quite clear given the immensity of these variables, that though we all share something in common with rheumatoid arthritis, we likely have many differences in our experience living with the disease.
This last week I came across something that adds another degree of complication to the picture. According to the U.S. Center for Disease Control, rheumatoid arthritis can be roughly grouped into three different disease courses:
- Monocyclic: Have only one episode that ends within 2 to 5 years of initial diagnosis. This may result from early diagnosis or aggressive treatment.
- Polycyclic: The levels of disease activity fluctuate over the course of the condition.
- Progressive: RA continues to increase in severity and does not go away.2
The Australia Institute of Health and Wellness similarly lists these three courses, with some insightful statistical information:
- Monocyclic: About one-third of those who get rheumatoid arthritis will have complete remission within 2 years of the disease onset.
- Polycyclic: This most common course, affecting around 40% of persons with rheumatoid arthritis, is slowly progressive punctuated by flare-ups (acute activity) and remissions. Flare-up periods last longer over time.
- Progressive: This aggressive course occurs in almost 20% of cases. It is a constant and destructive form of the disease, which causes deformity, disfigurement and even premature death.3
In our own RA in America survey, of the near 3100 respondents, 63% had never gone into remission. 20% had previously been in remission due to medication, but the disease is once again active. 8% have completely gone into remission due to medication. 7% went into remission without treatments, though it is active again. And 1% had RA go into remission on its own.
There will be some sampling bias in our survey demographic for a myriad of reasons including self-selection, but it still gives a clear picture that variation in course, outcome, response to drugs, and remission rates, are highly varied.
To draw a conclusion from the immense amount of diversity even in people who share the same diagnosis, I would say it is important to remember that though we all share many similarities, we also have many differences in how we experience RA.1-3
Has having RA put a hold on your ambitions?