In 2010 I saw Dr. EC Keystone give a talk on advances in the treatment of RA. It was called "The Most Exciting Time in the History of Rheumatoid Arthritis" and I blogged about it here. I'm still absolutely convinced that things are much better than in the early 1980's when I was diagnosed - we have many new drugs to choose from that are much more effective than the drugs of the past, but I'm not convinced it's enough anymore.
Lately I have been finding research papers that make this wonderful progress look less impressive. For one thing it is disturbing when Low Disease Activity is equated to remission in the decision of whether to reduce or discontinue treatment. In how many other diseases is treatment stopped or tapered when there is still evidence of activity?
This is the way I look at the issue. I have 20 joints in my hands that are checked by my rheumatologist during each visit. He uses the DAS 28 scale to judge disease activity. One finger joint has fused during treatment with anti-TNF drugs and four more of them show moderate activity now. That could result in very poor hand function in the future because 25% of my finger joints might end up mostly unusable. This is not enough reason for a change of treatment. It is considered low disease activity despite the possible results. The reason I do not count my wrists in this equation is that they are fused and no longer function as joints since no movement can occur.
"We don't see hands like this anymore" Recent quote from rheumatologist
Here is another study that monitors functional capacity of patients over a period of three years and concludes that those who require surgery have worse ability to function. More timely access might help, but for many of us this needed surgery is considered elective and we wait; For others it is not affordable.
This study and the one after it really led me to tackle the topic of lifespan:
Patients with rheumatoid arthritis have better functional and working ability but poorer general health and higher comorbidity rates today than in the late 1990s. This study concludes that the advances in treatment and the attention given in the "treat to target" strategy have been successful with rheumatoid disease activity outcomes. "However the result was just the opposite with regard to overall health and co-morbidities". While the lifespan in the general public has increased, this has not been the case with RA patients. This makes me agree with the authors that there are still challenges in the treatment of rheumatoid arthritis.
The icing on my non-celebratory cake
Influence of Radiographic Joint Damage in Mortality Risk in a Cohort of Rheumatoid Arthritis Patients: A 20 Years Survival Study
"This mortality gap has increased in the last years since mortality rates for RA have remained constant throughout time while mortality rates for the general population have declined."
These two studies taken from abstracts of the American College of Rheumatology meeting this year agree that while treatment and symptoms have improved the bottom line hasn't budged. Our lives are shortened in the same way as in the past. Biologics have been in use long enough that we should be able to detect an improvement in mortality rates. This is not the case. Of course it doesn't change the lives of any of us on this course, but it does give us a darn good reason to advocate for more research, ideally into why the bottom line isn't budging.