Hi
I'm new here and have had RA for the past year. I've been on NSAIDS, steroids, DMARDS, failed, so now also on benepali. Being on so many meds has made me think about whether any of these will eventually work and how that will look. I'm just curious about what the outcome has been for you all in general. Have you gotten your condition into remission? What does remission mean and how does it feel to you?
Thanks 
Remission would allow me to plan my life ahead
Wow! Wouldn't that be good.
Climbing Pen y Fan. If I could do that before I kick the bucket. That's what remission would mean to me. 😍
Bless you!
I did it twice but I wouldn’t recommend it as those occasions were pre-diagnosis and the memory of the second descent still leaves me cold! The excruciating pain jarred through my big toes, ankles, knees, hips, spine and neck so I could never contemplate a third. I had previously done Snowdon and forgot the duck-egg blister discovered in the car park after the descent. Had I taken my shoe off halfway down they would have had to carry me off the mountain!!
Remission to me is that medication has my RD under control and I’ve not needed painkillers since weaning myself off Prednisolone 18 months ago. However, newly diagnosed with AMD is grieving me more ... but that’s another story ... I could prepare in advance for RD restrictions but how best to protect my sight in order to continue using the online British Library Newspaper Archive is more worrying for me.
That's rough, really sorry. Every day I'm grateful when things don't get any worse.
I agree...coming down is always worse than going up!
Oh heck, Dodo. That's a rotten diagnosis. I don't know much about it but truly hope there are treatments out there to help preserve your sight.
Unfortunately, my feet have never been sturdy enough for long distance walking, dancing etc and always produced spectacular blisters which took ages to heal. Wishing you well
J
Thanks. Your mention of spectacular blisters brought back memories of 10 days hospitalisation in 1952 when a blistered heel went septic not long after I outgrew callipers and rubbed a hole in my sock. Walking into GP practice was difficult as I couldn’t get that heel to the ground. Mum was advised to kaolin poultice a lump that had developed in my groin and Dr would visit in a few days: he forgot and when Mum intercepted him visiting a neighbour he took one look at the abscess and called for an ambulance! I treasured the letters from my classmates and whiled away the time off school in correcting them. My favourite was the boy’s who spent time after Saturday morning pictures with ‘some grils on the hill’. Oh happy, innocent days!
Oh heck but that sounds grim. You've certainly been in the wars haven't you? Yup. Those happy, innocent days when your GP would know you and do home visits!
Yup! Prior to RhA diagnosis, I was fobbed off on the phone by my designated GP who dismissed my symptoms and I never saw him again from that day to the day he left the practice! Annoyingly, his name appears in subsequent 'Consultations' on my Medical Record but it was the Junior Dr and a young locum who came to my rescue after a requested home visit was initially refused! My eldest reminded the practice in no uncertain terms that they had a duty of care and the young locum was fantastic; the Junior Dr listened and ticked all the boxes for full bloods so the Rheumatoid Factor and Anti-CCP readings were speedily confirmed. I'd soldiered on for too many years because of my previous medical history .....
I do like a young, fresh and enthusiastic doctor whether junior or locum. Up to date knowledge and keen, they've not had the time for the daily grind to knock off the fairy dust and kill their enthusiasm
That’s why I couldn’t bring myself to lay a formal complaint. Instead I relied on the 111 service in the interim and researched the interests of the other Drs in the practice. I switched to a female partner with expressed interests in the elderly and their medical complications and made a point of recording my appreciation of the two youngsters. Even the hospital Registrar commented on the young locum’s dogged pursuit of an early appointment after referral to Rheumatology, for which I shall be eternally grateful.
Do you think your diagnosis of AMD is from any medication?
I honestly don’t know.
I instigated weaning off Prednisolone after 6 months, reducing by 1mg per month, which took another 6 months, fully appreciating the difficulties others on here were experiencing from longer exposure.
I’m fortunate to have a high pain threshold, cultivated from age 2 - pre-NHS - with the promise of surgery at age 12 for what I now know were congenital defects in my feet. Aged 13 I was ‘signed off’ by orthopaedics as inoperable as the condition had been delayed too long.
Sorry to hear about the additional diagnosis.
That's on my to do list too. I had planned to do it this year in my 50th year but as I was diagnosed in August I guess it'll have to be moved to my 51st year ....hopefully. I hope you manage it too.
Not having to think about RA all the time.
I don't know if there is ever a remission with me. I have had good spells,but just laterly i don't see any. I am seeing the rheumy Tuesday to see what he is going to do with my hands and fingers.xxxx
I can't " like" your post, Sylvi as you're having such a lousy time. Huge hugs
Getting off steroids🙄
I was diagnosed with RA in Jan 18 and have escalated through the DMARD, steroids and now Benepali process. I don’t want to talk too soon but things are improving. I have issues mainly with the small joints in my body (thank goodness), so my fingers, wrists and toes and I have to say that swelling has reduced after 7weeks of Benepali. Long may it continue.
So what am I trying to say? It’s only when things start to get better do you realise how bad they were. So, remission for me is a gradual process and conditions based.
What does that mean? Remission to me would look like no swollen joints and no requirement for painkillers. But there are things on my check list that need to happen in order for me to get there I.e to wake up daily with no pain, to be able to get changed with no trouble, to be able to put my own hair up, to be able to lift a pan/kettle with one hand, to get through the day with no codeine, to come off MTX.
What does remission look and feel like for you and what conditions need to be met for it to be achieved?
Hi Kelmcg
My experience is very similar to yours, I was just diagnosed a month earlier and had symptoms from last Oct...
Things are definitely improving for me. I couldn't move out of bed at one point,or sleep because of my knee moving and hurting so much. Like you, cooking and eating was difficult because lifting heavy pans and kettles was impossible. Methotrexate and hydroxychloroquine definitely didnt improve things, only steroids did (plus loads of steroid injections). I tried Naproxen and codeine, etc, but they didn't work for me.
Been on benepali for just over four months and I can definitely feel a difference. I can lift heavier things without too much pain. I then began to lower my steroids (because things were going well, so now I am on 5mg/day) but my elbows/wrists/ankle are now getting a bit more swollen. So the benepali hasnt quite worked completely yet....
BUT it has helped so much and I can get out of the house and move like I couldn't before! This is why I was thinking about remission. Is remission this - improvement to the point where you can cope and do 'more normal things' and not be in *agonising/consistent* pain everyday? Where you have a couple hours of not thinking about RA (before you stand up from your desk at work and hobble around because your ankle is playing games)?
For me before, remission was being able to walk outside without crying. But I keep changing the goalposts and I think I need to realise that things will not be 'normal' again. Still need to adjust to having RA. Then remission was being able to exercise. Then remission was being able to lower my steroid dose (and stop thinking about food 24/7 as a result). Now I am blue-sky dreaming a bit and hoping remission could possibly mean taking less oral meds and still being able to move around without persistent pain in any joint.
It's only been a year. But a terrible one at that. Am I getting ahead of myself? Probably. I'm so lucky and I just have remind myself sometimes that a couple of months ago I was crying to my friends that I just wanted to leave the house. And I have. Baby-steps.
Not having to take any drugs before I can get up in the mornings and do things without worrying abt the consequences later in day
I'm really interested in everyone's reply . I'd love to know what is remission and how do you know if you are in it . I know 20 months ago I was on double crutches and unable to walk far and pain was horrendous . Now I'm only having Humeria fortnightly but I'm still living on solpadol maximum dose everyday and now the naproxen has started up again . Yes I'm not on the horrendous cocktail of drugs and painkillers I was on but without what I'm taking I'm still not pain free . Is this the remission if it is I'm going to continue to enjoy it while it lasts as occasionally my pelvis locks and back spasms and I remember what it looks like 🤗💐
Being able to excercise, running around with the grandkids, not taking buckets full of meds that make me feel rubbish, no crushing fatigue or brainfog that makes me doubt my mental competence. I could go on. Just to feel normal, whatever that is
For my OH, no fatigue!
Hi I I am also new on meds it’s been 6 months and am on benepali and mtx I also am wondering if I will go in remission and what that will mean . I still have a lot of pain in feet and hands and hoping the meds will work but having doubts. Very tired in the afternoon from the combined drugs 
Me too, fatigue is a massive problem...
Its a fantastic question. I think there may be rather a gap between what it looks like clinically and how everyone would like to experience it!
Mine's in the Remission Mission wall. Back in 2014 NRAS created it, click or tap on the names to reveal the answers of those who didn't upload a pic remission.nras.org.uk/
Everyone, thank you so much for replying and sharing! I know there may be a disparity between what remission looks like clinically and to us but I do hope you all get to where you want to be x
The mission to remission
NRAS answer to my question about remission.
Can you get joint damage while in clinical remission?
Remission 
Remission/Acceptable??
