In remission ?

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I've recently had my annual appt with my rheumatologist who once again said I was doing well, that the RA is well controlled and I continue to be in remission. Obviously that is good news. The bad news is I am more than 2 stone overweight but am doing my best to try to lose it. I explained how I have been particularly over the past year noticing more pain in my wrists, hands, feet, ankles, left shoulder and elbows. Certainly not unbearable but just more than I used to have. Some days I feel completely zonked out and have no energy but this never lasts more than a few days. Just a week before my appt I was like that and my joints ached more. But despite telling him this he just reassured me that I had no swelling and I was doing well, encouraged me to lose the weight and said I "fluctuated" and it was better to be like that than to have long spells of flaring up as that can be more damaging. So I came away still slightly confused but determined to try and shift this weight. I have been walking almost every day but after a while find I get a lot of pain in the same two areas of my left foot sometimes the right too. I am going to try and ignore it and keep going if I can but just wondered if anyone else has been told they are in remission but still gets pain? Even as I'm holding my tablet to write this my wrist is playing up. Maybe I'm expecting too much by thinking remission means no pain?

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9 Replies

  • Posted

    I am in a similar position but have put on the weight but struggle to do has much regular excercise.

    Walking with air cushioned trainers helps me. I also having regular aches and pains, but thankfully not long term.

    I dont seem to get zonked like so many sufferers and have had the disease for 6 years.Suppose we are all different.

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  • Posted

    Didn't know their was such a thing as remission with RA, I've had it for 15 years plus and never been told I'm in remission even when showing no inflammation on blood tests, and fatigue is a big problem with RA some days I am completely done in.

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  • Posted

    Hi Debra,

    has your Rheumatologist ever mentioned Fibromyalgia to you?  I have never heard of anyone with RA going into remission and Fibro , with me anyway, mimicks similar pain and extreme tiredness etc - just a thought.

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  • Posted

    Have you ever seen a blog called Rheumablog? Or Carla's Corner? Both have RA - and both frequently say their rheumy insists they are well/in remission because he can't see anything and their bloods are good. But they know and feel otherwise.

    Sukes: Wren (Rheumablog) was in total remission for many years. She had started with palindromic RA which ran for several years and then disappeared. Then it returned as "proper" RA - I don't think she's been in remission since but it does happen occasionally.

    Some doctors talk about remission when the symptoms and markers are well controlled by medication - I doubt many of them have RA themselves though!

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  • Posted

    I was told that remission is the aim but not everyone is "lucky" enough to achieve it.When I was diagnosed 8yrs ago with RA I was told I was sero-positive and had very high levels of inflammation. Apparently those that are sero-pos can get worse as time goes by than those that are sero-negative so I do feel lucky to be functioning as well as I am. It's just that because I'm only on Hydroxychloroquine(Plaquenil) I don't have regular blood checks and no my rheumatologist has never mentioned or suggested fibro.

    I haven't seen those blogs but will look them up. It is hard sometimes getting across the sort of pain you get at the same time being told to lose weight and keep active/exercising but I do appreciate it is important to. Thanks for replies.

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    • Posted

      Yes I was in remission last January as had no tender joints, couple swollen ones and crp of 10 . I felt well. They crunch all those into a DAS 28 score. If that score is below a certain number it s called remission. There are different bands for low, medium and high disease activity.

      However feet and ankles are not part of this equation .

      but as you are having no blood checks then you don't know how much inflammation you have- nor does he. It seems he is using swelling/ or no swelling as his criteria for saying you re in remission.

      You our are also on the mildest DMARD so I think you have a case for asking if there is something more he could give you to hold back the disease esp as things seem to be getting worse. 

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  • Posted

    I totally agree, remission should be no pain no morning stiffness and no fatigue. My blood tests were looking terrific when taking 20mg inj MTX + 5mg prednisolone. My rheumy was happy but my life was aweful, I was sick, experienced every day pain and often thought that if this was going to be my life, I'd rather quit.

    Today, after changing medication and 6 months of slowly getting better I have 95% my life back, no pain, no morning stiffness, no fatigue... for now. That is what I call remission.

    In my opinion, it should be for each one of us to say if we are on remission or not.

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  • Posted

    RA has no known cause nor is there a cure; and, as you are still experiecing 'flares' obviously there is no obvious 'remission'   As for losing weight try the 5/2 diet.   In a nutshell eat normally for five days of the week, the remaining two cut your calories to 1/4 (or less) of what you would normally have.

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  • Posted

    All remission in any autoimmune disorder is an absence of signs and symptoms - it can be drug-induced remission where the result is due to optimally adjusted medication or it can be natural remission where the autoimmune part of the disorder has stopped being active (burned out) and so no medication is required to manage the signs and symptoms. 

    But in autoimmune disorders it is unusual for the burning out to be permanent - and it can reactivate at any time.

    But there is another side to it: many doctors go only by the things they can measure or see on imaging. It requires symptoms as well as signs to be included and if you still have symptoms you are probably not truly "in remission". But to get that admission you may have to find a different rheumy. The blogs Carla's Corner and Rheumablog have both discussed this aspect at lenth in the past.

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