Remission -- Now What?
I personally think that if you achieve remission, the first thing is a major celebration. The question becomes what happens after that? For most RA patients, a major part of our life is spent coping with the disease and managing it – including medications, doctors’ appointments, insurance claims, uncertainty in scheduling work and family life, and just figuring out how we feel every day. Does that all go away if you go into remission?
If I hadn’t read first-hand reports of remission from other RA patients, I’d be compelled to think that remission is a mythical beast along the lines of Big Foot or a unicorn. While there is ongoing discussion both in the medical community and the patient population about what really constitutes remission, generally it’s defined as sustained low rates of disease activity. RA can’t be cured but it is possible to control it to the point that it’s “under the radar.” (The American College of Rheumatology [ACR] and the European League Against Rheumatism [EULAR] has a great slide presentation on the definition of remission here.)
On one hand, from a patient standpoint, it’s very tempting to want to discontinue taking RA meds. Just not having to take the medication is reason enough, but then you add in the potential side effects, the inconvenience of injections or infusions, as well as the often prohibitive expense of biologic drugs, it’s hard to make a case for actually staying on the medication.
On the other hand, RA doesn’t just go away like a cold or the flu. While taking medicine when you don’t have any symptoms doesn’t seem logical, those (expensive, side-effect-prone) medications are precisely what will keep RA from flaring again.
This is something that rheumatologists have been struggling with for years. Previously the treatments for RA weren’t that effective but with the advent of biologics, more and more patients achieve remission. Now it’s estimated that between 20 percent and 40 percent of patients now achieve remission.
There have been a number of studies on this topic including continuing medication, tapering or lessening the medication levels, and stopping treatment altogether. The most significant studies have been done on TNF biologics because this is the largest class of biologic drugs used to treat RA today. A synopsis of some of the more prominent studies can be found here.
The evidence from a new, nationwide study comes down overwhelmingly for staying on a biologic treatment plan even if the patient is in remission. In this study more than 500 patients stopped therapy while slightly more than half that number (286) continued on with medication. The key results showed:
- Patients who stopped medication had significantly increased disease activity based on the DAS28 score (a standard measurement based on the condition of 28 joints).
- Patients who stopped therapy were three times as likely to flare as those who stayed on their treatment plan.
- Patients who stopped therapy had a much higher number of hospitalizations than those that stayed on therapy.
While achieving remission may not come with the good news that you can stop taking your medications, there is some good news in all of this. Previous studies indicate that reducing the dosage helps stop flares better than stopping treatment altogether, so it might be possible to take less medication and still remain in remission. The other good news is that once treatment was restarted in those patients who had stopped, they were able to regain their low level of disease activity fairly quickly (median time was 12 weeks).
The first biologic medication for RA was introduced in 1998, less than 20 years ago, with several more introduced since then and even more being researched today. As a class of drugs, biologics are still relatively new with a lot to be learned about them. It’s very encouraging that with the advent of these drugs more and more people are achieving remission and perhaps, one day, will be able to reduce or stop their medications.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?