What is Remission of Rheumatoid Arthritis? Part 1

alligator claw

Can the Rheumatoid Arthritis go into remission?

I always thought that remission was like the Holy Grail – hard to come by. However, I never realized that it was also hard to identify.

When somebody has cancer, he fights for remission. His whole family prays for remission. The remission itself may be elusive, but he knows what it is! It is no more cancer. At least for the time being…

It is not so with Rheumatoid Arthritis. They haven’t really decided what it is. Look at what one rheumatologist said: “To a considerable extent, defining remission in RA is like defining pornography; we have great difficulty agreeing on a definition.”

How many RA patients go into remission?

That depends upon who you ask.

According to NIH, rates of remission of Rheumatoid Arthritis vary from under 5% to over 16% because of differing definitions. Those ranges are substantiated by much of what I have read. One study reported on Medscape says the remission rate can be up to 20% using certain criteria. Compare that to what one doctor said in Arthritis Today: “If you get treated within two years of the onset of RA symptoms, you have more than a 50 percent chance of achieving remission.”

Is he saying that over half of those who are treated early (during the first 2 years of RA) will get remission?

Alas, I am not a doctor. But, I have read dozens of abstracts and detailed reports on remission. I have never read anything like that, however he qualifies it.

It also depends upon how you ask.

There are various sets of criteria which fulfill various definitions of remission. NIH concluded: “The use of different definitions of RA remission leads to different results with regard to remission rates…”

Two broad definitions of remission with one basic distinction

1) There is a generic understanding of “remission” with a connotation that we all know.  One online dictionary defines remission as the “absence of symptoms of the disease and return to good health.”  In part, Wikipedia says, “a cure(that) is the end of a medical condition.”

2) There is a big difference between that and what rheumatologists often call “clinical remission.” They are referring to a specific set of criteria which usually does not include the “absence of symptoms” or a “return to good health” or a “cure.”

Hopefully, I did not confuse you. Here’s a link to a wide-ranging set of definitions of remission of Rheumatoid Arthritis. It gives 6 different descriptions of clinical remission with varying criteria. It is at Science Direct. In Part 2, you can  get a closer look at how the rheumatologists define remission. And we’ll ask why it matters to us.

UPDATE: Please see parts 2 & 3 of this series, & also the new remission criteria: New Rheumatoid Arthritis Remission Criteria

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

27 thoughts on “What is Remission of Rheumatoid Arthritis? Part 1

  • September 2, 2009 at 9:43 am
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    Thank you! And new website looks great!

    Reply
  • September 2, 2009 at 10:16 am
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    Thanks for stopping by. You are so sweet. Sweating it out over here trying to get lots more things fixed on here. And don’t you think it needs some paint and wallpaper?

    Reply
  • September 2, 2009 at 10:22 am
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    love the picture…thats how i feel sometimes.

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  • September 2, 2009 at 10:24 am
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    Remission is very confusing to me. See, with cancer people stop taking the medications that put them in remission. We still have to take ours or we relapse. At least, that’s my understanding anyway.

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  • September 2, 2009 at 10:25 am
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    I had juvenile RA from age 3 & went into “remission” when I was 21. I developed osteo-arthritis and fibromyalgia, and the RA came out of remission just this year at 55. Wow is it worse now than it was as a kid!

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  • September 2, 2009 at 11:55 am
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    I really like your redesigned site — it’s restful on the eyes and looks more “professional,” whatever that is. Good job!

    I was diagnosed with RA in 1988. The disease went into remission (for me, that meant very rare serious flares and no daily foot pain or joint stiffness) ten years later. It became active again last year, and I’m now taking Arava and sulfasalazine, hoping to keep it in check. I’m thankful I had that time in remission; I was able to backpack high in the mountains several times and enjoy life without pain. I wish it would go into remission again, but I sort of doubt it will.

    Thanks for the research and the post about RA remission. This disease is so strange I’m not surprised at all that doctors and specialists, and each of us who have the disease, have different perceptions of what remission in RA actually means.

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  • September 2, 2009 at 12:15 pm
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    There is just not emphasis or research on this topic. You compared it to the Holy Grail. I compare it to something that is only avaiable to an advantaged few. I am on combination treatment, and the whole idea of combination treatment is a greater chance of remission. When I was first diagnosed, I beleived to be possible, now I just want to make it through the day. I think a big issue is the lack of attention towards RA. We talk about awareness all we want, but there really is not enough resources being put in the research of many chronic pain conditions. That really has to change.

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  • September 2, 2009 at 4:31 pm
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    Although I wouldn’t call it remission, I’ve certainly fared better in the last three years than the whole 13 yrs I’ve had RA. The first two years I had it, I would lie awake sobbing in pain. The worst damage was done those first couple of years necessitating foot surgery and shoulder replacement. My docs also put me on big time meds like combos of MTX and Enbrel, Rituxan and finally Orencia two years ago. I eventually had an allergic reaction to Orencia and had to stop.

    Can you believe I’m only on 3 mgs of Prednisone and weekly MTX injection today? 13 yrs after being dx? I’m a fairly active 41 yr old mom to a 7 and 2 yr old and run my own business. Am I in remission? Maybe. But I still have morning stiffness and dull pain in my joints, but it’s NOTHING like it used to be.

    I’m very thankful, but I know it could rear its ugly head any day. So I count my blessings and keep chasing my kids around…well, at least fast-walk after them.

    Reply
  • September 5, 2009 at 10:15 am
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    The sad thing is that lots of rheumatologists won’t even take the time to use a tool like DAS but simply decide (on which basis?)
    I think I know on what basis they decide.
    My blood boils too, because it’s very conceited. And it’s linked to worse results.

    Reply
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  • January 3, 2010 at 6:04 pm
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    I know this is off topic but I would love a piece of that watermelon. Summer is when I feel better and the watermelon is an awesome reminder that summer will be here before I know it. I am just too sore now to hold my breath but I know it is coming. – Denise

    Reply
  • April 21, 2010 at 7:24 pm
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    I have been taking chemotherapy for 5 weeks in hopes of a remission. I have improved greatly, in many areas, but … I still cannot shut my right hand. I can pull my fingers in toward my palm (like a cup), but that’s it. I find myself wondering if, in remission, I will still have nuances of RA to deal with, i.e. the current situation with my right hand. Any advice?

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    • December 15, 2014 at 4:05 am
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      Hi. I’m in spontaneous remission after 1-1/2 years of mtx and biologics. No pain really, though there is some stiffness now and then. But I developed tendonitis in both hands early on and they haven’t yet disappeared. But both hands are getting slowly better so maybe someday.

      Reply
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  • June 6, 2010 at 9:37 am
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    In my own personal experience, I would say there’s no such thing as remission. Rather, there IS maintenance. I have never had a period of time with absolutely no flares or other effects of RA. During a few years while I was pregnant and nursing babies and unmedicated, the hormone connection kept RA at bay. However, it still showed its ugly face periodically. All other years since I was diagnosed in 1997, medical treatment has been necessary to minimize pain, swelling, joint damage, and other RA-related issues.

    I think, just like the disease itself, remission varies from person to person. I’m so happy to hear that some actually do experience it! What a blessing! Those of you who are in remission now, I hope it lasts a long, long time and never returns! RA is something I wouldn’t wish on anyone.

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    • June 6, 2010 at 9:48 am
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      Hi Jodi,
      Good points. It does make me wonder about how RA can be active behind the scenes even in times of lull since it’s never gone & always comes back. I think in some patients, damage continues while they appear to be in “clinical remission” at least. I wish we knew more about how to measure this so RA could still be treated as aggressively as necessary in them.
      Maybe that should be our wish & greeting to one another: May you have a remission! :heart:

      Reply
  • June 6, 2010 at 10:43 am
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    In the 8 years that I have been diagnosed with RA, I’ve been in remission twice. (as told by my rheumatologist) The first time it happend, I had in my head that maybe I was mysteriusly cured!! It last about 4 months and then it came back with a vengence!! Even worse as before. In the two times that I had remission, I had undergone surgeries approx 1 month prior. I’m not sure what connection that has with remission. One thing is for sure, I would rather not have a remission, because in each time with me, the RA came back worse. Does anyone know what surgery would have to do with remission?

    Reply
    • June 6, 2010 at 11:29 am
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      Daniele, I’ve never heard of that connection. I’ll definitely look around. I did hear from a woman who was treated for breast cancer w/ strong chemo & that put her RA into remission for a long time. She never said if came back. It is a good point that you make because a lull in the disease often is followed by more agressive RA. 🙁

      Reply
  • January 5, 2011 at 11:51 am
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    Hi Kelly and fellow RAr’s I totally believe in remission! I developed JRA at 8yr old and went away in my teens ontil i was about 45 when full blown symptons kicked in! I did have big time things happen that i believe kicked started the RA! Nobody can make me believe otherwise that i had remission! Also i tottaly believe its hereditary..family and my poor daughter..Psoratic Arthritis..covered in leasions,painfull,embarrassing lesions..Now under control with biologics…Ps. Kelly i navagated my ways to twitter sunday..logged in as judiintheskys …Just so you know that was me…lol..Love the site fixover and your dedication to the cause Kelly..Judi

    Reply
    • January 5, 2011 at 12:14 pm
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      Judi,

      Thanks for sharing the remission story. Remissions are more common with JRA than RA so I’ve read several times that they used to tell families that it woud “go away” or “burn out.” I even heard that recently from a family on facebook. Their doc said it would go away by about age 17. I hope in that case that it does. I’m always going to hope that it does come for me someday too.

      Reply
  • January 5, 2011 at 12:06 pm
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    Julie…Are you taking Chemo in the amounts of a cancer patients? That just freaks me out! Also wanted to add that the nurses i have talked to say that the biologics are a mini dose of chemo!..@Daniel…I had a rheumy tell me not to have anymore surgeries because it puts arthritis there!..That is funny (odd) because you have to replace joints somtimes that are damaged and too painfull to live with..Thanks for listening ya’ll..

    Reply
  • January 5, 2011 at 5:06 pm
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    I wonder if there is a misconception of what RA dr.s or medial experts use to gauge remission. If you compare the typical RA patient before any meds and then after they have been on meds, there generally is a degree of improvement. Some people more, some people less. Mostly if you are taking prednisone. So, if you look at the patient before ANY meds and how they have improved with meds they are better and this can be classified in some dr’s minds as remission or a degree of remission. I am not bedridden since I have been on meds even though my day to day life is greatly effected by pain, fatigue, etc. But, my RA dr. would say that I exhibit signs of remission since I am stable in my condition even though I still have all of the symptoms. I would rather call it stuck in my condition. In my thinking I always assumed that remission meant that there were no signs of symptoms or that there were no remains of the disease in your body and since there is no cure for RA and it is in your body I don’t know if there can truly be a remission. And that is my rambling answer!

    Reply
  • November 2, 2014 at 2:54 am
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    I am not diagnosed. My rheumy keeps telling me I am in remission and my stiffness is due to my age (53)and my swelling is just fat. He has diagnosed palindromic arthritis at one stage in 2009 and more recently it seems (though not told to me)my GP says I have RA but it’s in remission. If this is remission…I am depressed. I am exhausted and find it hard to move. My blood feels like cement and when I sit down it sets. I have some generalised…big toe; right ankle; right hip; lower back; right elbow; both knees; both thumbs and a sort of tenderness in my fingers. The joint pain is not severe at all. It often feels like the joints are on the verge of something or unstable somehow. My rheumatoid factor is positive and the anti-ccp 600. I developed asthma out of the blue in 2006 and continue to wheeze without symbicort each night. I have sleep apnoea. I have been diagnosed with underactive thyroid since 2006. One day I thought I would take a Naprosyn for the hell of it and could not believe the difference in the way I felt. I know I can’t keep taking them as I also have GERD and I used to only take it if I felt like a bone was broken(right ankle; right big toe or lower back). My GP has recently told me to take the Naprosyn for two weeks with my nexium. I have just completed the two weeks. It was heaven. They have organised for me to have a new sleep test but the exhaustion can’t be sleep apnoea as I now have it all back since I have now been off the Naprosyn for 48 hours. I am confused and am changing rheumies. When will I know whether I actually have RA?

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    • November 2, 2014 at 7:51 am
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      It might be that one rheum doctor would say you do now, or that another would “wait and see” like the one you have now. There is not a strict test, but with your blood work and symptoms, it does look like RD/RA. Maybe it’s still early enough that your joints aren’t raging yet. What does he say when you ask what else he could attribute the blood tests to? And the relief with anti-inflammatory medicine? I feel the same way about them (prednisone & therapeutic dose ibuprofen) as you do – they seem like a big clue when they work so well.

      Reply
  • October 14, 2015 at 1:35 pm
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    I was diagnosed at age 7, treatment was aggressive and I was in remission between 10-16. At 16 I had a monster flare and did the mtx, pred, cortisone injx routine and then went into remission again very quickly. Now at 29yo I’m fighting the flare that just won’t quit. Started in Jan of this year and I just now starting to feel normalish. Took a long walk about last Saturday because I felt great and now I’m suffering the result… It’s Wednesday.

    The fatigue just wont let me go. My body seems to have given up. I pray for the remission I had when I was in my late teens and early twenties but I fear it may not happen this time.past remissions have been amazing – I really seriously thought maybe I was RA free (a Dr told me that jra doesn’t “translate into adult RA” so I thought I was fine) boy oh boy was that wrong!

    Reply

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