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Wednesday, 11 September 2013

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




2 comments:

  1. Wow how glad am I that I've gotten back to my regular yoga! It's quite scary when you look at those charts.
    I absolutely agree though, that we are the best guide to how we're doing.

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  2. I agree with you Gilly. The post just took a major turn when I actually looked at those charts. I still have not tried yoga though I do a lot of stretches.
    Glad that Dr Pincus has been doing that research. It gives me more faith in my judgement

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