Sustained Rheumatoid Arthritis Remission Is Rare | Rheumatoid Arthritis Warrior

Sustained Rheumatoid Arthritis Remission Is Rare

Headlines can have a curious effect. They’re supposed to make you read a story, but people don’t always read the whole thing. Sometimes they just make you laugh: Lung Cancer in Women Mushrooms, Miners Refuse to Work After Death, Woman Improving After Fatal Crash. 1
With medical topics, a headline rarely tells the whole story. Nevertheless, headlines are quoted and soon become accepted facts. Then they are repeated, no questions asked.
bridge headline

Is Rheumatoid Disease remission common, rare, easy, or hard?

We won’t examine remission fully today so you might read some other warrior articles about Rheumatoid Arthritis remission. Remission definitions are variable and criteria subjective. All this leads to the current state of affairs with RA remission:

  1. Surveys of large RA populations demonstrate that remission is rare.
  2. Some small European studies claim Rheumatoid Arthritis remission is common and achieved without much difficulty.
  3. A public (including healthcare professionals) sees advertisements which insinuate that treatment allows most people with RA to live a completely normal life.
  4. Most significant of all, almost every patient receiving the label clinical remission actually experiences damaging disease activity in joints and possibly elsewhere.

Sustained remission Rheumatoid Arthritis study

Into this mess enters a new take on Rheumatoid Arthritis remission: calculating sustained remission. This new study considers changes in disease activity over time. The study Sustained rheumatoid arthritis remission is uncommon in clinical practice concluded that “in clinical practice a minority of RA patients are in sustained remission.”

The study authors recognize the value of sustained remission, suggesting that sustained remission might be necessary for actual cessation of damaging disease activity and would be preferable to “drug-induced disease suppression” often identified as remission.

Let’s adjudicate remission when three things are understood.

1) An accurate, consistent measure of disease activity is required. It must include joint activity that is invisible to the naked eye and recognize disease activity taking place outside of joints. It should not rely upon blood tests which are typically “normal” in 30 to 40% of patients (due to genetic tendencies).

2) Patterns of disease must be documented and accounted for in measures of remission or disease activity. Although no two patients are identical, many patients experience a flaring disease pattern and others constant disease activity. When patients are examined on Day One and Day 168 of a study, it may not be possible to identify flares that occurred in the interim or current disease pattern. In trials for medications, there is no representative “untreated” group to compare disease patterns.

3) Clinical trials may not apply to the wider population. They may achieve high percentage of disease remission using small numbers of patients who may be unrepresentative of the general RA population for various reasons. Some provide more early or aggressive treatment. Others use exclusion criteria to identify likely responders (i.e.: excluding complicated disease with extra-articular RA, common additional diagnoses like fibromyalgia, or normal blood values such as CRP).

Talking about sustained remission matters

We know that natural RA remission is rare and a majority of patients do not have a thorough lasting response to the routine treatment methods of today. In this case, I hope this headline is repeated. While it’s not very witty, recognizing the facts is necessary before the status quo can be improved; and this study is a step in that direction.

1More  amusing headlines.

Important related reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

10 thoughts on “Sustained Rheumatoid Arthritis Remission Is Rare

  • March 30, 2012 at 1:56 pm
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    I am one of those people who has had remissions. I’ve had JRA (dx age 10) for 30 yrs. Each remission has been from 1-3 yrs. At the end of the remission my flare is usually so severe that it takes years and many many drugs to get it under control again. I’ve had 5 remissions in 30 yrs. 10 yrs ago I had a remission for 2.5 yrs after starting Enbrel. An emergency surgery at that point set off another flare. That was my last remission. I was hopeful that the Simponi I started 8 months ago would trigger another remission, but it is simply taking my disease activity down quite a bit, without a full remission. I can see a pattern, that the older I get, the longer between remissions. I wonder if I’ll ever have another.

    My remissions were characterized no pain or joint symptoms and no need for medication. The last one, 10 yrs ago, I stayed in remission as long as I kept on the Enbrel. On it, I was completely asymptomatic.

    Reply
  • March 30, 2012 at 8:07 pm
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    On the other hand, remission sure is nice when you finally get lucky – it’s definitely worth trying for. Took five years, and cycling though hydroxychloroquine, MTX, Embrel, Humira, Remicade, Cimzia, and Orencia, most of which did nothing for me, before I hit the jackpot with Actemra.

    Six months of feeling normal now, no swollen joints, no fatigue. A little pain from the wrist joints that now have no cartilage – being in remission doesn’t make the cartilage grow back – but nothing like before starting the Actemra.

    I do wonder how many folks miss out on the possibility of remission because they, or their rheum, or most likely of all their insurance company, give up before cycling through all of the available medications.

    Too bad there isn’t something better than trial-and-error to find out what meds will work for any particular RA patient.

    Reply
  • March 31, 2012 at 12:00 am
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    When I was on Enbrel for 6 or 7 years, I considered it a near-remission – which is funny because I still needed 5 mg of Prednisone daily, and still had flares requiring short-term higher Pred. But it felt like a remission to me because I was able to do almost everything I wanted to do, which was wonderful. Unfortunately, I had to go off it because of a problem with my white blood cell count and I haven’t yet found anything else that works.

    Jeff, I’m glad to hear your report on Actemra, because I have recently been discouraged about trying yet another med and that is the next one on my list.

    I really think some day we will be able to have blood and/or gene tests that will identify which med is most likely to work for each individual – but I’m not sure how soon that will happen…

    Reply
  • March 31, 2012 at 10:37 am
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    While “remission” is something that we all aim for, I am satisfied with my current “stable” status.
    It isn’t perfect, but it is nearly a polar opposite of where I was a year ago.
    I’LL TAKE IT!

    Reply
  • April 1, 2012 at 9:28 pm
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    I was in ‘remission’ for a couple of months, but still taking Enbrel and sulfasalazine. I’m now back to low disease activity and have started methotrexate again (I was on mtx holiday for 5 months). It’s kind of a bummer, but I feel lucky to have good response to the Enbrel…I hope this activity isn’t a sign of the Enbrel failing as it’s the second biologic I’ve been on. I have a rheum doc appointment coming up, and I’m interested in asking her if- based on her experience, my history, and the current meds available today- what my chances are (in percentage) of sustaining joint damage that will affect my abilities and range of motion in the next 5 & 10 years. I know that nobody can accurately answer this but I’m hoping that she’ll give me an ‘off the record’ opinion so I can add it to my own.

    I do know things can change, but I think it’s time that our rheumies start giving us a prognosis opinion, even if they make it clear that they’re guessing. We are entering an age where many rheumatologists have had patients on biologics for several years- they should start to be getting an idea of what the future MAY hold for us, and if we request it, share what they think.

    Reply
  • April 1, 2012 at 9:53 pm
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    I’m a relative newbie to the world of RA, diagnosed on Jan 31, 2012. That said, while I long for remission, I’ve been pretty impressed with the symptom reduction in the last 2 months. I’m still in a flare that varies from a very low burn to an occasional forest fire, but the forest fires are less frequent and not quite as hot. While it would be nice if this got put out, right now I’m thrilled with better (was sick as a little yellow dog for over a year).

    Medications: MTX, Prednisone, Mobic, Tramadol ER, Lidoderm Pain patch, Folic Acid.

    Reply
  • April 3, 2012 at 5:27 pm
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    My doctor has nothing to offer but more drugs and surgery. I don’t like either option.

    Reply
  • April 4, 2012 at 6:30 am
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    My doctor has always aimed for remission, and I am glad that she does, because it’s hard for me to hope for. I’m on relafin, orencia, sulfasalazine, methotrexate, tremadol, vitamin D, vitamin B complex, iron, and folic acid. I still hurt, I still suffer from fatigue. I may not believe in a remission for me, but I guess what I do believe in, what I strive for, what I hunt for, is a healthier me. Right now, out of a week, I have about four, mostly fatigue free, mostly pain free days. I consider that a huge success. Is it possible I will have a remission some day? I’m not ruling it out. I might win the lottery some day too. But until that day either comes or doesn’t, I guess what I’m saying is that doesn’t rule out trying to be healthier and trying to do the best possible for my health.

    Warriors are like that, I hear.

    ~Jennifer

    Reply
    • April 4, 2012 at 9:52 am
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      thanks for your awesome comments, Jennifer. I think most people I’ve met w/RA have that warrior spirit. We encourage each other in it too – in case it wanes at times from the weariness of battle.

      Reply
  • Pingback: New Rheumatologist Visit | Tanya Martin

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