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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (10)
  • melody123
    2 years ago

    The article is good until the last paragraph We will not be able to stop the medicine that we took to achieve remission or you will suffer. It makes it seem possible to decrease or stop the medicine which it is not possible to do and because we want so much to be normal and stop or decrease them it is making it seem like that can happen. In my opinion nothing should change when remission is achieved Therefore remission should not be a term that is used. It should be “under control”. My left shoulder is now involved due to this so called remission and decreasing meds. You are playing with lifelong handicaps here and you shouldn’t Thank you for listening

  • eboohenry
    2 years ago

    I completely agree with Melody 123, it is a total disservice to call it remission if you are still taking drugs. All that has occurred is the suppression of the immune system and symptoms are quashed. Unless you treat the underlying cause of the over active immune system you’re not cured. The disease is still there. That is what is wrong with the current AI disease model-mainstream and big Pharma seek to suppress symptoms and not look at causes. This is true for most diseases. Our model of healthcare is seriously flawed and detrimental to patients. We have a long long long way to go until anyone achieves remission.

  • Tamara Haag moderator
    2 years ago

    Thanks for sharing your comment and your concerns!

    There are certainly many valid opinions on what the best terminology is for discussing impacts of RA (for instance, many people would prefer the disease itself be called “Rheumatoid Disease” rather than “Rheumatoid Arthritis,” as it is so often confused with osteoarthritis). While many of us do think of “remission” as having the same meaning as “cured,” the terms are not interchangeable. Remission means that no symptoms are present, with or without treatment continued. Many of us are familiar with the term “remission” in conjunction with cancer, and the reason most oncologists continue to monitor patients in remission for five years is because there may still be cancer present in the body (aka, not “cured”).

    My rheumatologist uses the term “medically-induced remission,” which I think helps clarify while there are no current symptoms, that is due to the continuation of treatment.

    I certainly share your desire for a cure, and support any efforts made toward developing one.

  • Tich
    2 years ago

    You’ve prepared a very good article, Carla. Thanks for the summary of the study. My intention when I started taking radon was to stop the cycles of flare and prednisone use. Secondary to that was to make my biologic treatment more effective. Now that I am a bit more healthy I am more aware of the side effects caused by my biologics. I’m tempted to stop them. At least the current one is taken only once every 4 weeks. Thanks again. You folks are doing good work here.

  • Carla Kienast author
    2 years ago

    I’m glad you liked the article and find value in the site as a whole. I was an avid reader before I started contributing articles and am delighted to be part of rheumatoidarthritis.net. I’ve actually stopped my own meds on more than one occasion (after discussions with my doctor) and have always gone back. Treatment plans are certainly individual to the patient and I wish you all the luck with yours. If you decide to change/discontinue yours, please talk to your doctor about your goals before you do. Let us know how you’re doing.

  • melody123
    2 years ago

    This is a very important topic. I just went through achieving remission on Orencia I made the mistake of stopping it after three years. In a matter of two months my left shoulder was now affected when it had not been before. Now back on the Orencia and will hopefully stay on it until a cure. Do not stop the biologic or you will definitely see how quickly your joints will deteriorate. Fortunately I am better quickly with the initial dosing of every two weeks but left with a sore shoulder. Do not stop ever

  • Tamara Haag moderator
    2 years ago

    Hi Melody, Thanks so much for your comment! I certainly understand your frustration with the terminology. While we often think of “remission” as being interchangeable with “cure,” the two terms actually mean different things. “Remission” means that there are currently no symptoms, but this may be with or without continuation of treatments, and it does not necessarily mean “cured” (this is why oncologists continue to monitor patients in remission for five years, as the absence of symptoms does not mean that there is no cancer in the body). My rheumatologist uses the term “medically-induced remission,” and I think that is a little more clear.

    I understand your frustration, as these medications we take have all sorts of undesirable impacts on our body, and being in “medically-induced remission” feels very different than achieving remission without continued treatment, as we still have to deal with all the side effects and/or infusions/injections and/or expense of the drugs. The term “remission” does not reflect the hardships involved in receiving RA treatments. What we all really want is not remission, but a cure, and until we get to a cure we’ll have plenty to be frustrated about.

    Thanks so much for being a part of our community!

  • melody123
    2 years ago

    It is a disservice to call it remission. To most people it would seem like you’ve achieved something when in reality nothing changes. It is more damaging than help to call doing well remission. Just call it doing well on current therapy please. There is no remission if you can’t stop taking the meds

  • Carla Kienast author
    2 years ago

    Melody: Thanks for sharing your story. Obviously this is a topic under a lot of scrutiny. I believe that actual patient experience, like yours, is critical in establishing standards for treatment plans during remission.

  • Wren moderator
    2 years ago

    This is such interesting and hopeful news, Carla! As someone who has experienced both a lengthy (and what seemed like a “true” remission, to me) and many short, intermittent remissions, I find that learning that these amazing drugs make them more possible for everyone is heartening. And the knowledge that when remission occurs, stopping their use can allow the disease to bounce back is important, as well. What a shame we can’t predict whose disease will strengthen again, and whose will remain dormant! But maybe we’ll figure out ways to do that someday, too.
    While biologics have so far not been very effective against my particular dragon, I’ve no doubt that the triple therapy DMARDs I take have helped to keep it much quieter than it might be without them. Stopping any of the drugs available to treat this disease should only be done after much thought and consultation with your rheumatologist. Each of them, be they conventional Disease Modifying Anti-Rheumatic Drugs or biologics, are valuable, vital tools.
    Thanks for another great article! :))

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