I'm no stranger to the world of RA but I am a stranger to the world of remission. I am not very clear - despite doing some reading - of what this actually means. On my current medication combo, I am clearly in a much better state that I was before. I probably have a flare up lasting 7(ish) days every 6 weeks or so. When I last saw rheum, I was doing really well and my DAS was 2 point something, which is obviously fantastic. However, does this make me in remission if I am still having the regular (although a LOT less regular) flare ups? Prior to my current medication combo, I was either flaring every couple of weeks or just in a permanent state of active RA. In comparison, well there is not comparison (!) but I am still perplexed.

Thanks. :)

8 Replies

  • Hiya Crashdoll. This is a moot point with me. You probably know that according to the DAS 28 calculations a score of 2.8 or less is considered as being in remission, medically induced in your case. Flaring reasonably regularly obviously indicates that the disease isn't well controlled & this is where I think the DAS (44 joint) calculation is preferable over the DAS 28 as it includes more joints & as such a better overall view of the affected joints. If my feet, ankles, hips, shoulders & neck were included (all of which are my problematic areas) I'm pretty confident my last score wouldn't have been 3.03 (low disease activity), which my Rheumy prefers to consider as me being controlled, as I also flare despite needing to take low dose steroids for 22 months now.

    Interestingly, my Consultants in Spain never spoke of the DAS & so I was never privy to what I scored even though the 44 joint DAS was performed. They based their findings & any meds changes on talking to me, blood results, x-rays & a full body examination. Here I think they rely on the DAS score too much which, in my case, only includes hands, wrists & occasionally elbows, all of which have less RD damage/swelling/tenderness but do have OA damage/pain but which of course isn't applicable.

    Sorry, gone off on one!! I suppose the short answer is we all need to be flaring when when we see our Rheumies so they have a better idea of how our bodies are reacting to the meds prescribed. That or have more regular appointments, say every 3 months, as I consider I was far better controlled seeing my Consultant 4 times a year than I am now seeing one once a year & a Registrar in between (who took me off meds that control me because I scored 2.04 sending me into a flare). I was certainly less reliant on steroids & I'm not controlled in spite of what my Rheumy thinks & I don't think you're in remission! :(

  • I guess a lot depends on how bad your flare-ups are. If you can still continue with your life pretty well during these times then perhaps the word 'remission' is appropriate. For me, regular flare-ups involving disabling stiffness would make a mockery of the word.

    Something I'm trying to come to terms with is that there are times - flares I suppose - during which my pain is much more widespread and I feel generally a bit grotty although I'm still pretty supple and my mobility is good. I've had a long-ish such period recently. I have some concerns that this may have left me with more damage to my feet and possibly to my hands as well. If it hasn't then I wouldn't be at all surprised if the word 'remission' gets a mention.

    I've heard that pain in itself is not a great indicator of disease activity. Somehow this rings true with me although the reason I can say that is that I don't usually get levels of pain I can't cope with. So if I continue to get painful phases which do not seem to be doing damage, if my energy levels and mobility are good enough to allow me to do the things I need and want to do and my bloods are fine, I'd say that was remission.

  • I was told I was in remission a year + ago. Rheumy took me off all my meds and since end of January I have been in the most appalling flare. Took steroids which helped a bit, but then I had to come off them. More flare. I finally proved to the rheumy that I actually still had RA after an MRI scan showed I had synovitis and she put me back on an anti-tnf, Enbrel. That didn't work perhaps because I was tapering the steroids at the same time. I have moved to another rheumy who is more thoughtful and he has put me on Cimzia. Day 2 so I can't really report anything except optimism. But I like the formulation 'controlled' rather than in remission because it suggests that something (medication) is controlling you. I fought hard for them to keep the meds and they ignored me, and I have had the most appalling 8 months. Lets hope it gets sorted, but I'd advise everyone to insist that whatever happens its done gradually. Cathie

  • I agree that 'controlled' is a much easier to nail down than 'remission'.

  • For me "remission" means not having flares while NOT needing medication.

    Otherwise the disease is under control but is still there just waiting to burst out again as soon as the medication is lowered.

    But you don't know that you are in remission until the medication is tapered off. I think I was for several years in my fifties when I was on no medication for about 8 years. And even then it is remission - not cure. My RD came back with a vengeance later and I'm still up and down with flares and constant pain although now better controlled.

  • I certainly agree with you about controlled rather than remission.

    I replied to another post re remission but also put it on this post.

    I have just had my annual appointment with my rheumy and apparently, according to him, I am in drug induced remission!

    I still have to take NSAIDS on a daily basis though as still have pain, but not the awful pain I had prior to diagnosis. So I suppose this is what is meant as remission. Although he told me that if I stopped my DMARDS my pain would return.


  • Thank you for all your thoughts. I think I prefer the word controlled too. :)

    Some people may look at me with wrist splints, a crutch and a grimacing face (I do try to smile when I walk!) and think "how can a 26 year old think this is GOOD?" but in comparison to say, 2 years ago, I would much rather live my life on these meds and in this way. I have joint erosions which are obviously very disabling BUT my RA is controlled, at least in the diagnostic sense.

    When I read the statements from the remission campaign, I felt a bit down because there are still lots of things I can't do as a result of the damage that the RA has left behind. Obviously, there are still plenty of things I can do, so please don't think I am being negative! Perhaps this is why I started questioning what remission means to me.

    Thank you again. It's helped me put some confusing feelings into words.

  • Hi

    I saw my rhumy last week, considering I've had 7yrs of trying to find the right biologic etc. I had a flare up that lasted through 4 different biologics. But after all this time last week he said I was in a drug induced remission. That great but I've had RA 24yrs fibromyalgia 8yrs and a lot of permanent damage has been done.. I lost my job 7yrs ago as I was a nurse,I now can't walk very far, I have to use a wheelchair for going out. I can't do stairs or grip/hold things properly.That will never change, but they have finally found the drug that works. I still have to see him twice a year and I have to see the nurse every 3months. But I'm in a drug induced remission.

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