Rheumatoid Arthritis Remission | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Remission

Is Rheumatoid Arthritis remission whatever it means to you?

I could not resist picking up the “managing arthritis” magazine last week in the rheumatology doctor’s waiting room. For some reason, I want to know what – if anything – they are telling patients who have Rheumatoid Arthritis. Is it weird how I choose that over a Woman’s Day magazine?

Right there on the cover: a Rheumatoid Arthritis remission article. What did they say? They admitted that Rheumatoid Arthritis remission is not well defined and encouraged patients to come to agreement with their doctors about what “remission means to you.” I wonder how the doctors like that.

3 Ways to look at Rheumatoid Arthritis remission & 3 descriptions of it

A definition of Rheumatoid Arthritis remission is indeed still developing. Doctors say it is exciting to be talking about since only ten percent of RA patients achieve remission naturally – without treatment. They need ways to measure remission so that they can discover whether certain treatments increase remission rates.

There is more than one way to think about RA remission. Here are three distinctions: First, many researchers are describing a state of “low disease activity” even though a more traditional designation for remission means absence of disease activity. A second distinction is whether patients are continuing treatment during the so-called remission. This is a drug-induced state of remission. Finally, the specific attributes of various definitions can be quite dissimilar.

Three lists of criteria used for remission classification are American College of Rheumatology (ACR) criteria, US FDA criteria, and criteria which uses the Disease Activity Score (DAS).  It is very important to notice which criteria were used when reading a study or the claims of any medicine or regimen. The looser the criteria, the higher the remission rate.

What is interesting to me about Rheumatoid Arthritis remission?

  • In an article in 2006, Dutch researchers call for keeping cure- like remissions distinct from those of comparable “low disease activity” for the purpose of research.
  • They note that patients with low anti-CCP antibodies are more likely to remit naturally.
  • I’ve always thought that the FDA definition sounds more like genuine remission and not a sleight of hand.
  • Perhaps patients would prefer stricter criteria as much as researchers would prefer looser ones.
  • “Remission rates while being treated with DMARDs are comparable with the reported natural remission rates in RA…”
  • Remission rates tend to be higher with use of Biologics together with methotrexate.

I was intrigued by a tangential comment with regard to the COBRA trial: “However, almost all remissions ended after prednisone was stopped [32].” It sounded odd to me that any doctor would consider prednisone suppression of RA symptoms a remission. One good doctor I know calls the prednisone repression of RA symptoms a “false reality.” I’d definitely not refer to it as remission.

Read the rest of this article on Rheumatoid Arthritis remission in Arthritis Research and Therapy.  It includes a table with the three sets of criteria for remission.

Has your rheumatoid doctor ever asked you what remission would mean to you? Has he told you what it means to him?

UPDATE 3/2011: Read about new remission criteria for RA: New Rheumatoid Arthritis Remission Criteria

Recommended 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/

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15 thoughts on “Rheumatoid Arthritis Remission

  • May 3, 2010 at 7:28 am
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    I think that I am actually in remission-I take 25 mg of methotrexate a week, and 400 mg Hydroxychloroquine per day, and take no steriods whatsoever. I also take 75 mg of diclofenac twice per day. My DAS score is .26 (less than 1.0).

    HOWEVER, I still experience fatigue and aching frequently. Warm, dry heat (e.g. the middle east) makes my fatigue and aching go away, interestingly enough.

    Reply
    • May 3, 2010 at 9:36 am
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      Jamilla, I’m glad you are responding so well to dmards. Hopefully, they will also help slow any permanent damage. It was my experience that only Biologics helped the fatigue. What happens if you reduce the diclofenac?

      Reply
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  • May 3, 2010 at 8:31 am
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    Id like to think of prednisone and remission as a crock of hooey.. its a band-aid bringing with it severe side effects that last the whole time your on it.. holy heck.. i will never take the prenisone again as long as i live even for those two hours of semi ok ness it brought.. the forever after hot flash that wouldn’t wear off, the manic behavior, the crash after the manic behavior , yeah lets leave my side effects to just that and ill go back and sti on the 30 pounds i cant loose i gained in 3 weeks on prednisone… toodles

    Reply
  • May 3, 2010 at 12:58 pm
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    My “Rheumatologist uses the word “controlled” to describe my RA. One of the biggest lessons learned over the past 10 years of this is that “medicine is not an exact science” This is true with any disease. RA can involve any or all of twenty or so cytokines so it can be very different from one person to another. There is no magic bullet!

    Reply
    • May 4, 2010 at 8:31 pm
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      Excellent point. Exactly why changing “mechanisms” is a good idea if a TNF proves to be ineffective for a specific patient’s RA. Joanne, I love hearing about smart docs like that who talk facts with their patients, helping them to be informed patients too. 🙂

      Reply
  • May 4, 2010 at 12:39 pm
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    Remission for RA? I like the word “dormant” when lucky enough to get a break from swelling,fatigue,pain and being robbed of my active life. “Controlled” is a good word as well for those RA’ers lucky enough to function daily with minimal symptoms. I have reminders everyday even without pain.

    Reply
  • May 5, 2010 at 9:27 am
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    I’m not convinced that remission from RA exists. I have had people tell me that they have had remission for X number of years. I believe that, perhaps, a very few people may experience remission, but after 7 1/2 years, am convinced that I will not be one of them.

    Reply
  • May 7, 2010 at 12:43 pm
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    My doctor considers me to be in a remission from RA. What that looks like to him: low inflammation/sed rate counts. What it looks like to me: no fever most days, much less inflammation, fewer # of joints involved. It does NOT mean that I am feeling pre-RA normal, nor does it mean that I am free from my RA meds. It just means that things are much less bad right now than they’d be if I weren’t taking the drugs. I can do about 65% of pre-RA normal, I’d guess.

    (Having stopped the drugs a couple weeks ago because I’m having recurring sinus infections, I am now seeing the RA start to come back.)

    Reply
    • May 7, 2010 at 4:41 pm
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      Lisa, does he have that trade magazine in his office that says the patient needs to agree to the remission definition? 😉

      Reply
      • May 17, 2011 at 12:05 pm
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        Kelly, very informative and well done site!

        I am male, 50 and RA began very suddenly about 8 years ago. I thank the Canadian medicare system for a fairly quick referral to a good rheumatologist. I did wait a few months to get in and controlled the RA with prescribed pain medication, Arthrotec but it was hell some days. After being diagnosed and all the usual blood tests, xrays, etc., I was started on methotrexate. I gave up the Arthrotec medication after a few months and began lowering the mtx dosage. I ended up sticking with 7.5 and at times as low as 5 mg per week for several years. I loved it, I could “appear” to function normally and nobody knew I had RA unless I told them. I did have symptoms of course but not bad enough to radically change my life.

        Early this year due to some erratic blood tests for liver enzymes I was advised to stop mtx. That was 4 months ago and nothing has changed, I feel the same. I do get days when there are bad aches and fatigue but so far I and the Dr. consider it almost a remission. The more time passes with low symptoms the closer I get to being considered as being in real remission. I now makes me wonder how long ago I could have dropped the mtx.

        Reply
        • December 18, 2014 at 4:55 am
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          This is also my situation. I had/have a serious infection and had to come off mtx and biologics. I am still waiting for an official diagnosis on the infection. But it’s been 5 months since I’ve come off all arthritis medication and I am practically symptom free.

          I have tendinitis in some fingers but the doctor says that’s not an active part of RA, meaning it could be brought on by RA but that it isn’t readily treatable with RA medications. But those fingers seem to be getting better very slowly.

          I get stiffness in my feet after sitting a while and my knees and a couple of fingers seem a little tingly now and then. But no real pain and visible swelling.

          All this happened after being on mtx for 1y7m and biologics for 1y2m. I began the mtx within 3 months of initial symptoms. As I stated above, I have been off both drugs for 5 months now.

          It was all unexpected and I am hopeful that it will last. I know the statistics aren’t good but a woman I met sometimes goes years between treatment during remission.

          But I do worry every time something feels stiff and wonder if it’s going to all come crashing down. And maybe the drugs won’t work as well the next time around, either.

          I’d be interested to hear others’ experience!

          Reply
  • December 3, 2010 at 4:36 pm
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    Kelly,
    I had to have meniscus surgery 10 days ago. So I got off my methotrexate for the week before surgery and the week after. While at the hospital they gave me a big dose of antibiotic and 3 days worth to take home. The day of surgery my hand was puffed up like a balloon. A day after finishing the antibiotic the swelling was almost gone in both hands.. It has been 11 days since surgery and I was supposed to resume the Methotrexate.. I have not had horrible pain, swelling, or stiffness in this last week. I question myself and wonder if I should take the methotrexate or just wait and see if it flares up again… I suppose it would be best to ask the Doc. I will see her in another week.??I am not complaining but am wondering if this is a remission or just the antibiotics working. Merry Christmas, Kelly and may God bless you!
    Steph

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  • February 6, 2012 at 3:37 pm
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    I am in natural remission from RA and feel great. I have made drastic changes to my diet and have made exercise a regular part of my lifestyle. As a result, I no longer take methotrexate or plaquenil and it’s been two years. I believe remission from RA is possible for others.

    Reply
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