Hiya
Newly diagnosed with feet and especially hands issues. On a 20mg tapering steroid dose and increasing methotrexate dose. The question I never asked is what is remission? Will I always have some degree of pain and stiffness and just have to live with it or is remission being pain free? Not sure whether I should be sucking up and learning to live like this or should I be aiming for 100% normality?
I'd say stay optimistic and aim high! As I'm sure you'll realise by the posts on here, it's different for everyone but it is possible to live well with this pesky disease. I'm about 3 years in and am doing well; some morning stiffness and the odd twinge but managing without steroids or pain killers - not 100% but near enough ☺️ I don't rush around as much as I used to but at 61 that's probably par for the course!
My combination of of methotrexate, hydroxychloroquine and Cimzia means that I am essentially symptom free. My consultant says I'm in remission. I do get the odd twinge but nothing to bother me.
However if you already have damage to your joints, remission would be where your condition stays stable without any increase in symptoms.
Any damage to your joints is likely to be permanent. If your symptoms are largely due to inflammation and the treatment reduces or eliminates the inflammation that could put you in remission.
I think it is best to stay aware it could be a long road or a quicker road but either way be aware there will be bumps and never 100% free as things will change as you get older too. Being realistic helps too. I have had no remission after 3 years and have now 4 autoimmune diseases BUT I am always hoping there will be days maybe weeks in the future I can say so much better than I was before.Good luck on your RA travels.
Hi and welcome. I have had RA for 20 years this year. It has been a journey of ups and downs but the good news is I am in remission and have been for a few years now. You could be the same if you take your meds regularly and do what your rheumy team tells you. I live a pretty normal life with occasional flare ups and have managed very well throughout most of the 20 years because I have always followed the advice of the team. They are the experts and their aim is to give you as normal a life as possible. To be realistic you probably won't get 100% improvement because any damage done can't be undone but you can have a good life, with minor restrictions, if you don't do more than your body can cope with. I wish you all the best.
I’m in remission. No symptoms and by a quirk of fate, had to reduce my weekly intake of methotrexate by 2.5mg. No effect after a week, so tried a second. It coincided with my annual visit to the rheumatologist. Third week, the odd twinge. Well into week 3 and I’m beginning to recognise the old signs. Intermittent pain in hip, shoulder. I’m beginning to appreciate that 12.5mg was set for a reason. Those rheumatologists, they know a thing or two about RA.
I’m in remission, albeit drug induced on mtx and biologics. I think the benchmark is a year of bloods within normal parameters. I say I think as that’s what my consultant implied when he told me last year.Of course, some of the damage has been done already and you may still have the occasional flare.
Thanks to all for replying. I think I’ve been pretty lucky so far. Diagnosis and starting meds has been in weeks rather than months. As a result my X-rays show no damage so far. Symptoms have improved on steroids already but have still some residual pain and stiffness. Just not sure how high I should b aiming the bar. Off work sick just now as I have a very hands on job. Feel guilt but realistically I need to put my sensible hat on and start taking care of myself.
It’s a difficult one to get your head round. Be gentle with yourself and try not to force things. Take care x
How Rheumy's determine remission is if your DAS 28 score is lower than 2.6. That is if you have a number of painful/tender joints (out of 28), a number of inflamed joints (out of 28), VAS score (your assessment on how you feel) & your latest ESR (sometimes CRP is used instead). These are then entered into quite a complicated formulae which results in the score.
How you determine remission is more down to how you feel I think. Defining remission as clinical remission here, not spontaneous, the two are quite different. That said I used to think I was doing quite well in the moderate range, that is until I had a general steroid injection which worked for one day (I don’t as a rule respond to general ones), I then realised whilst I thought I was ok it had obviously been some time since I had been because I felt wonderful for that one day! Symptom free… symptoms I had, that I’d accepted as being my new norm without really realising, weren't the old me if you understand?
Anyway, many people who achieve remission not only determined by their DAS 28 score but who genuinely feel as though they have no RD at all may be fewer than those who accept that whilst the meds are working they'll never be the me they were before first symptoms, diagnosis & being controlled by meds. We get on fine but may still have some limitations be it not getting as far on that walk before needing to rest or still having stiffness lasting around an hour, maybe more, in the morning. It's really more a place of being, how you feel you should acceptably be feeling & if there's room for improvement. This is why it's so important to have a good patient/doctor relationship with your Rheumy, so you can work together to achieve the best possible state for you.
I hope this doesn’t seem too negative, but I think better to be honest that sugar coat it & you think I placated you. You will improve on how you are now because you're only at the start of treatment. You may have a dip once the steroids are tapered to a stop & your MTX takes the lead, maybe needing an increase or NSAID added but as long as the balance is right so should you be. Unfortunately flares can either randomly happen or be stress related or be down to poor control, though can often be eased by a short course of steroids or an increase in meds dose or even sometimes a change in med.
What can muddy the waters further is OA, different disease but both joint related. A Rheumy can determine the difference between the two so it's helpful if you can too. RD affected inflamed joints have a boggy feel, OA ones are more hard & can have lumps which can appear alongside affected joints called bone spurs. RD joints tend to be, but not always, symmetrical whereas OA affected aren't always. With OA stiffness tends to be later in the day when less active or resting, RD stiffness is classed as in the morning. There are lots more comparisons if you check on a reputable site but whilst the two are joint related that's where the similarities end really. I just thought it worth mentioning as it's more common to have the two as we age unfortunately. I don't know if you've had a look but if not this is the NRAS website nras.org.uk 😊
Thank you for taking the time for such an in-depth reply! It’s a steep learning curve at the moment. My score was 5.5, so on the higher side. My son has colitis so have spent the last few years learning about steroids immunosuppressants and biological treatments. Now I’m starting again with my issues. 🙄 I’m realising that everyone’s history is so different it’s hard to predict my outcome! I need to learn patience- not my forte. 🥴
Hello Nomoreheels, thank you for your explanation, so well and beautifuly explained, I didn't know half of this, it explains alot. Thank you.
I can remember 20 years ago being told that I was in remission and could tail off all medication. After 10 years of intermittent swollen joints and pain, and occasional steroid treatment of these, I then had a major flare again. No, putting up with pain and swollen joints is not a good idea. That was some time ago...and I hope that the time taken to recognise that I was not 'in remission' would not be as long, and now I would not put up with it for so long.
Nras have an information page on their website about remission if you follow this link nras.org.uk/resource/remiss... I remember a few years ago there was an nras exercise called "Remission mission". During which various people spoke of what remission meant to them and I remember everyone was different. To me remission is where I am now which is different to where I was 10yrs ago. I live with some pain in my hip and foot due to damage but otherwise my joints and swelling are quiet. I'm able to do most of the things I want to right now but listen to my body when it tells me to rest. 🙂
Hi 👋. I still have some stiffness and pain x some days worse than others but no where near how I was previously. I’m not sure if it all goes completely but I think everyone is different I’m a lot slower than I used to be that’s for sure 😂😂
A bit like everyone else, I have days where I have hardly any pain and nearly forget I have RD then I stupidly over doit and then I feel horrible for a day or to, funny though not painful joints, but pain all down my legs and very tired. 🙄 After a couple of days of taking it easy I'm then back to normal again. I suppose we all have to work out what our boundaries are for the pain to creep in. I hope your having a lovely weekend and wish you well.
Clinical remission is as someone has said here Disease Activity Score (DAS28) of less than 2.6. However to maintain a state of remission will more than likely still require medication. Drug free remission is, unfortunately quite rare, but if the DAS is low then low dose medication is possible. The way RA is treated now is very, very different to how it was 10 years ago. Now the aim is to treat hard at the beginning and get the disease under control then reduce medication over time until a sustained remission state can be achieved or at least low disease activity. Many people once their RA is under control can go months, years even with little or no symptoms but may still experience occasional flares due to environmental triggers e.g. stress, childbirth, menopause, other illness etc. RA is not a one size fits all condition and is often described as a 'syndrome' which is why we have such an array of treatments to select from and while it may take a bit of trial and error to get the 'mix' just right for you, it is achievable. So hang in there. Please do ask your rheumatologist or specialist nurse to refer you to New2RA Right Start when all of this and much more can be shared and explained to you. nras.org.uk/resource/rights... or if you'd like our New2RA resource pack please email enquiries@nras.org.uk or order online at nras.org.uk/resource/newly-...
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