We Need More RA Research!

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.

The Best Judge of How You're Doing With RA

For a long time now it has been easy to find stories online about other people's experiences with treatment of autoimmune diseases. Some are from patients who are frustrated by doctors who treat them based on their lab test results.

                                Semi shredded lab tests and X-ray reports

Those doctors don't seem at all like the ones I "meet" in social media, and are certainly not like my own doctor. The main area that slowed down treatment in my case was a lack of "the language" and lack of knowledge about treatment strategies.

Dr Theodore Pincus's recent article titled "Documenting the Value of Care for Rheumatoid Arthritis, Analogous to Hypertension, Diabetes, and Hyperlipidemia: Is Control of Patient Self-Report Measures of Global Estimate and Physical Function More Valuable Than Laboratory Tests, Radiographs, Indices, or Remission Criteria?" is at this link. That is one of the longest titles ever.

He says that there is no single biomarker for diagnosis, management or prognosis in RA patients. In fact the most significant way to measure the future quality and quantity of life is the individual patient estimate of status and physical function on the Rapid3 or MDHAQ form. He sees this as the best way to explain improvement in quality of life with biologic therapies.

He specifically states that "The most significant markers for future quality of life and premature mortality in RA are not laboratory tests, radiographs, indices, or remission criteria but individual patient self-report measures of patient global estimate of status or physical function." I take this to mean that YOU are the best judge of how you are doing.

                                                            YOU at the center

Dr Pincus is consistent in what he says. I read this article in The Rheumatologist from 2011 where he discusses past and current research and usage of the MDHAQ and RAPID3 scores from patient questionnaires and his appreciation of their value. That makes so much more sense than looking at markers and telling patients who are miserable  "Just look at these lab reports. You're doing improving nicely."

I hope the new paper from Dr Pincus, Dr Castrejon and Dr Yacizi will help to enlighten some of their fellow rheumatologists.

These two charts that I took out of the article in The Rheumatologist really struck me. The top one is pain and its effect on mortality. The lower one is the influence of exercise on mortality.

They measure survival rates from a population in Finland. It's shocking to see what a difference exercise makes to your life and how little pain alone is affects it.  If that doesn't make people exercise nothing will. 

I spent years not exercising because I felt that pain was a good reason to avoid it. Not knowing then what I know now, in my mind pain trumped everything.  

 

                                                        Picture from Arthro-Pilates.com

Here's another significant paper:

Gain in Quality-adjusted Life-years in Patients with Rheumatoid Arthritis During 1 Year of Biological Therapy: A Prospective Study in Clinical Practice http://www.jrheum.org/cgi/content/abstract/40/9/1479