I am in a large room in a downtown Toronto hotel, chairs lined up facing the front and around me are over 300 other people, most of whom are here for the same reason I am. A quick glance at hands confirm membership in the RA club - there are more swan necks than down at the waterfront I am amongst my peeps.
We are here for an RA forum with the impossibly charming title of “The Most Exciting EVER in the History of the Treatment of Rheumatoid Arthritis.” The evening is organized by The Arthritis Society and after an introduction by our MC David West, a member of the National Board of Directors, we hear from Mary Kim, who tells us of how RA sidelined her life and then she found a career with The Arthritis Society as a Master Trainer and a leader in the Arthritis Management Program. And then it is time for the keynote speech by Dr. Edward Keystone, a prominent Canadian rheumatologist.
For the next hour and a half, the audience was captivated. Dr. Keystone is a terrific speaker, making complex biological and chemical processes easily understandable and doing it all with an excellent sense of humor. I learned that:
- 40% of people who come to a doctor for the first time with rheumatoid arthritis have no rheumatoid factor. Therefore, many rheumatologists consider rheumatoid factor and sedimentation rate blood tests irrelevant in making a diagnosis, relying instead on history and physical exam. Dr. Keystone said “95% of the time, you make a diagnosis without lab tests.”
- Anti-CCP is a new blood test for RA which is positive early on 60% of the time. In cases where it is positive, 90% have RA. Anti-CCP is positive up to 15 years before the onset of RA. This means that the field is starting to look at what’s called pre-clinical RA, identifying family members of people with RA to test them for anti-CCP in the hope of being able to turn off the RA before it starts!
- Rheumatologist has moved to early and aggressive treatment because the earlier you treat, the easier it is to achieve remission. In addition, joint damage can happen very early on. A study showed that four months after symptoms first appeared, 90% of x-rays are normal. However, an MRI was positive for joint damage in 50% of the cases. Dr. Keystone believes RA should be treated as a medical emergency.
- The goal of treatment is to bring improved quality of life measured by a reduction in symptoms, stopping progression of the disease and allow the person to participate at work and at home. The ultimate target is remission and there’s been such progress in the treatment of RA that this target is only 12 years old. Prior to that, doctors hoped to slow the progression of the disease.
- Methotrexate is the “gold standard” of treatment. In Canada, the use of this medication has changed to use a higher dose subcutaneously. When methotrexate is given in pill form, less than the actual dose is absorbed, whereas the injectable form allows more of the medication to get into your system. It also does not go through the liver and is therefore less toxic, as well as resulting in less nausea.
- Another recent change in treatment approach is called “treat to target” or “tight control”. When a person has diabetes or high blood pressure, it is treated to target, i.e., blood sugar needs to be down to a certain level and blood pressure should be around 120/80. Treating to target in RA means treating to remission. One study divided participants into two groups, one treated the regular way, with doctors using whatever therapy they believed was best and the other group was seen every three months and if they were not in remission, medication was adjusted. After 1.5 years, 18% in the regular group were in remission and 65% of the treat to target group had achieved remission.
- The Biologics have changed the landscape of treatment, allowing people to achieve remission and prevent joint damage. 've also lead to a reduction in heart disease and stroke, allowing people with RA to live longer. As well, Biologics allow the body to heal and perhaps grow new cartilage - a study of combination therapy using Enbrel and methotrexate showed that after one year, x-rays were better than when the study started.
- The near future promises to change the landscape of therapy yet again. A biologics in pill form is currently being tested and if the long-term safety is good, it will be on the market for another two years.
- New therapies are coming out on an accelerated rate. Over 70 years, there were only seven treatments - gold, sulfasalazine, Plaquenil, methotrexate, etc. - but in the last 15 years, 10 more treatments have come on the market.
Dr. Keystone also explained the different kinds of Biologics, calling them guided missiles. About 17 years ago, I was at another forum where Dr. Keystone spoke about researchers looking for guided missile to treat RA. To realize that we are now here, that the goal has been reached was an amazing moment.
I almost cried several times during Dr. Keystone speech and it took me a while to figure out why. All my life, I’ve lived “Under the Shoe”, with the fear that any moment, the other shoe would drop, that my life would be sideswiped by a flare, taken away from me, knowing that there aren’t a lot of options for treatment. And on that rainy night in Toronto, there was a shift within, leaving the undercurrent of dread behind and substituting a faith that even if the shoe drops, there are now enough options, with more coming every year, that I have a safety net. That it is reasonable to believe that if the worst happens and my current medication stops working, there are enough medications out there that it is possible - even perhaps likely - that a flare will be of short duration. And that’s a miracle.
You can watch a webcast of the forum on The Arthritis Society website. I highly recommend that you take the time to sit down with a cup of tea and watch the whole thing. You’ll come away knowing more about your disease and what can be done about it and the optimism in Dr. Keystone’s speech is contagious. You’ll feel better about having RA.
Lene Andersen is the author of the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.