Remission/Acceptable??: Hi I'm just wondering, how... - NRAS

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Remission/Acceptable??

Hi I'm just wondering, how those on the forum who would describe themselves as in remission or even 95% there 'know'. It might sound a daft question and I suppose it's different for everyone. But, for example, can you do all things you did pre RA (sports, hobbies etc) pain free? Are flares non existent? Or, do you still have to constantly pace yourself and watch what you do, unlike people who don't have RA? Although I am far from there at the moment I just wonder how I'd know what's 'good enough' or whether to strive (and keep pushing the rheumatology docs) for what I'd consider to be pre RA 'normality'. Just curious as to what I can expect and to manage my expectations in the long run... I know we probably all hope for pre RA ''normal' but is this unrealistic?? How good is good enough/acceptable? Thanks!

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Its good to be hopeful and determined so you can go back to being how you were before or atleast close! I think you're in remission so to speak when your inflammatory markers are lowered and stay at a certain level consistently. When i was in remission i needed no medication etc however my knees were still a bit weak. I officially came out of remission after blood tests showed raised inflammatory markers and there was visible swelling in my knees! Hope this helps.

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Thanks for your reply. My markers have never been high really so I can only go off physical symptoms (I have plenty at the mo😂) but I'm definitely keeping hopeful!

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Hi, DMARDS!

How long were you in remission? Does it happen more than once?

Glad you had the experience. Hoping for mine. How are you now?

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Hi Bonnie! So i had juvenile rheumatoid arthritis (or juvenile idiopathic arthritis as they say these days) since i was 3 and was on medication for that till about age 11! And then when i was 17 years old I started getting a really bad pain in my knee and went to the doctors and a month before going to uni I was officially out of remission and put on methotrexate :( felt like the timing was less than ideal but what can you do eh? I hope you have the experience soon, i really do. I have always refrained from looking at whether theres a chance of remission again as i don't want to lose my hope that one day I'll be the active sporty person i always wished I could be. But I don't see why it couldnt happen! As for now, I'm managing my RA alright I think, on Humira and its treating me okay but early days. I also had a hip replacement last year (not something all 20 year olds experience) and that has helped with my mobility too. How about you, how are you doing?

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Dear DMARDSandMe,

I’m so sorry you’ve suffered with this for so long. I hope for you to find relief from this awful disease and to become pain free and live a long, happy life. God bless you.

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You must always keep pushing your docs to check that this is the best you can be. If you don’t ask you don’t get, and docs will assume that you are ok unless you tell them.

I am in medically controlled remission, and have been for most of last 6+ years now. I am rarely in pain from the RA (the OA is another story) and rarely flare. My stamina is not brilliant, and if I push too hard I will flare, so I have adjusted to a way of life that works for me and my RA. I don’t have to think about it, I just do it. Basically I do what I want, but make sure I get 8 hours sleep a night and have regular 15 minutes breaks throughout the day (useful for looking at this forum!). I also look after myself well in terms of diet and exercise. So life is 95% normal.

And no, I don't do some things I did pre-RA like going out drinking. But I actually prefer my new life style!

But I pushed my docs hard in terms of trying and tweaking treatments to get here.

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A useful answer HH. I am accepting of not getting back to hill climbing, long distance or Nordic walking, but I would love to walk 3/4 flat miles along the canal or similar. At the moment that just seems like a dream, it is a fine line between staying positive and optimistic and setting yourself up for disappointment.

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I'd like to be able to walk down the hall, but then I have much more than my RA to contend with. :-(

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I understand that, there have been long spells when I've not been able to get out. Kind thoughts

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Well said Mmrr, that's why I asked the question. You are so right it is a fine line and you don't know what to think but HH gives me hope and I am aiming for as near to pre RA normality as I can get. Thanks and hope you are feeling better these past few days.

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Thanks, I've had 2 reasonable days, met my son for lunch out today. It is so good to do something normal.

I hope you are ok too.

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That's great. Glad you are feeling better. Getting out definitely helps with the 'normality' thing doesn't it.. I'm ok but could be better (sounds like a school report sorry!) 😁😁

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I am just back from walking up (and down) a hill that no way could I have managed 3years ago! Like Paula-C now being on Enbrel has made a difference. 8km and about 200m ascent. Slowly and, as ever, looking at my friend’s backsides the whole time but I think probably managing just as well as many 62 year olds without RA. Don’t give up hope.

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Thank you (and well done on the walk!).

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I'd settle for that !

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As someone like yourself, still struggling to get a quality of life, I am really interested in your question as I'm unsure myself what is acceptable. Obviously I'd like to get as near normal as possible, but not sure how realistic that is.

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I've been in remission since early 2013 thanks to enbrel. I had one short lived flare in 2015, apart from that i don't need to take pain relief at all. I do get the odd twinge her and there occasionally, I think it's reminding me it's still there, but nothing bad enough to reach for pain relief.

I can do most things I did pre RA, but I am now coming up for 62 so I have to take that into consideration. I've been lucky and I've had no joint damage. I'm very active and walk a lot when we go on holiday, when I say a lot I mean several miles at a time. I know I'm extremely lucky and I'm very grateful that I have a wonderful team of people looking after me and when in the past I've needed help I've always been seen pretty quickly, that's probably why I've got no joint damage, I've always had my medication tweaked when needed to prevent this.

I see my consultant once a year and a specialist nurse once a year, so it's Nurse April time and consultant October/November, in fact I've just received a letter with an appointment to see him end of October.

Remission is possible I am proof of that, so never give up hope of achieving it. I was really bad prior to starting enbrel and to me it's miracle drug, I call it my magic potion.

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Wow, what a fabulous uplifting reply. Thank you. That is exactly what I love to hear and I'm so pleased for you. I shall keep on keeping on and aim high! Thanks again.

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Well ive been told im in 'my remission'. Markers are not normal but low and steady. I have 2 monthly blood tests and see rheumy 3monthly. Rheumy said to look forward not back and I will never be what I was and to aim to be the best I can with RD ... oh joy..... Actually didnt like what he said but has helped me deal with things. Im on a cocktail of meds and pain relief 4 to 6 hourly. On the meds im on im not considered for biologics. I walk with a stick and pace myself, I cant do the job I used to and was given pip due for review soon. Im 61 and diagnosed 2.5yrs ago. Seems to be there is a huge variation as I read others are as they were before RD and thats what I thought remission was when on meds. So thats me. 🙂

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Thanks Ruth. You are right, it is so confusing and I wonder if 'remission ' does depend on the type of RA you have - so it's really very different for everyone. I don't know, I'm only guessing. I find acceptance really hard to and am actually seeing a counsellor to help with it all as some days I could scream or throw something! Hope you continue in your remission and improve to. Thanks again.

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There is a huge variation, sadly for those who struggle. I know I have been lucky in responding well to the drugs. However I do think it can help if you frequently challenge your doctors (in the politest possible way of course) about whether this is the best they can do for you. And also constantly ask what else you can do to help yourself so you build up a conversation between you & doc.

Seeing a counsellor is also a great idea. This is a tough thing to come to terms with. I’ve accepted it now but the first years were hard Particularly as everything to dow with this disease is so slow!

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Agree entirely HH - and when you are the type who wants things solved yesterday, (ie me) it's so frustrating. It wasn't just the RA, it was the restricted eating I forced on myself in an effort to self cure and a refusal to take either pain meds or anti inflammatories at the beginning which just sucked all the joy out of my life. It also affected my close relationships... And the anger and 'why me' - ohhh dont get me started. The advice I got on here (particularly from you on the diet issue) really helped and I clung to it all. Still do! Thanks again.

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I agree with seeing a counsellor. I did too and it made so much difference to my view on life and RD in general

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I have found counselling really helpful. It might not change anything physically but ... To speak to someone not close or emotionally involved in your situation is liberating. Being able to just let it all out and explore without expectation or judgement on either side . Hope you find it good too.

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Yes having someone to talk to and who will give you an alternative point of view has been helpful so far. I always come out feeling more positive. Thanks.

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I do wonder if I should stop taking pain relief, 1g paracetamol 60mg dihydrocodien 4 to 6 hrly. If I dont take it I struggle with pain, I am now trying 50mg of paracetamol as was getting headaches. I dont quite understand why I cant have biologics as without dmards I would be climbing the walls...mmm if only I could but you know what I mean.

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I don't qualify for biologics either at the moment - but things are changing all the time and with biologics becoming cheaper maybe they will be more widely used. Mind you, they don't always suit everyone do they. RA is so individual and unpredictable that it seems to be guesswork and trying many meds which all takes so much time. Hope you are ok with the reduced dose of painkillers.

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I agree. I would be nervouse about biologics but would try....try anything really to improve. Saying that im so much better than I was. Yes im determined to try and reduce pain relief. I would not think the amount im on is good long term.

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Have you actually asked your present rheumatologist why you are not eligible to try biologic drugs? If it is because of the Dmards you are on ......is it possible they could be changed? Try to get your rheumy nurse to explain.

Have you thought of getting a second opinion from another rheumatologist...or speaking to the rheumatology pharmacist at your hospital?

If it was explained to you why you aren’t eligible for biologics it would at least take away that niggle in your mind.

I was eventually prescribed Rituximab 3 years ago...... it suited me very well and just before Christmas I was told I could be considered to be in remission .....but I have just been told I have to go back on the infusions because some symptoms are reappearing & my inflammatory markers are rising.

So it’s back on the merry-go-round .......again !

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Oh flip, just when you thought things had settled.

Thanks for your reply. Yes I was told as my inflamatory markers were stable down to just above normal and i dont have enough inflamation, just 3 to 4 constant joints inflamation that I have injections into I dont need biologics. My research shows that the rheumy that I see is best in area. He is now director of department or hospital or something cant remember so dont expect to see him as much. 🙂

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Yes...... I am not a happy bunny just going for the pre infusion blood test this morning......for the infusion next Monday.Grrr!

But you must still be in a lot of pain if you’re having to take all those drugs to help you get through the day .......I would definitely ask for a drug review. These days rheumatologist are so busy, I think if we don’t complain they think we are OK.

Although I didn’t really complain I just said .....look my wrists are really swollen again - and my rheumatologist sent me off for more bloods and here we are - almost back to square one......in a way I wish I hadn’t said anything! Although the weather is so awful .....sitting all day under a nice warm blanket in a comfy reclining chair could be quite therapeutic in itself!

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I get 2 monthly blood tests and see rheumy 3monthly, due in 6 weeks. I will say something. When I last said it cant be doing me much good haveing so much pain relief and he said the cocktail of drugs were managing me, but I will as I agree with you. I am concerned about rocking the boat as I have been quite fortunate as methx sulph & hydroxy side affects subsided quickly. Thank you for your input / support, shaken me out of complacency. Take care, really hope all goes well. X

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Be bold & say you have tried this cocktail of drugs for long enough maybe he would now please review your medication?

I find being firm but polite and virtually making the rheumatologist engage with what you feel gets best results. I’m extremely lucky in that my doctors do actually listen to me and I have played ball with them by taking the drugs they suggest.

Although I wasn’t best pleased by being told my rheumy wanted me back on infusions ....the aches and pains I’m getting now, bring back horrible memories about how bad & incapacitating the pain can get, so I am being a dutiful patient & doing as I’m told....I just hope I get a good result...I haven’t got time to start looking for a new drug regime now ..... I am having a new kitchen put in next month and that will take up all my time and energy !

Good Luck Ruth...I hope your rheumy can prescribe a new set of meds that help.

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Gosh I really hope it goes well for you. Wow new kitchen how exciting. Good time of year to have it done. Thanks for encouragement. Let us know how the new /revisit goes. 🙂

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It suddenly struck me a few minutes ago I haven’t had any acknowledgement from the hospital that my blood test appointment has been confirmed. 99 times out of 100 I screen grab the confirmation I didn’t do it this time when time is of the essence as one of the tests takes three days to come back.

Hey Ho I just hope when I get there they are expecting me!

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You could give them a ring x

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I emailed Switftqueue who do all the blood bookings and amazingly they came back within 10 minutes & said they could confirm my appointment and apologised for not sending me an email with the confirmation ...& attached it to their reply email .

Can’t ask more than that can I ? Some systems do work well...just not all the time.

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FAB. 🙂

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I agree that its hard to know how 'good' to expect to feel/be. I assumed that what I was experiencing for the last 12 months was as good as I could be. I woke with swollen , stiff and painful wrists and hands everyday and occasionally other joints. This lasted till 3pm most days , sometimes longer. It wasn't until I had a mega flare and saw a different nurse who told me that my experience pre flare wasn't good or the norm. My gp also looked at my records and said he felt that I had never really been out of flare so I realised that I should have expected more.

Its tricky. I was just grateful not to be as bad and in as much pain or as debilatated as when diagnosed but obviously I now have a yardstick along with a meds review. This forum is a great source of info about these things that the professionals are sometimes vague about. Thanks for asking the question . I for one will be reading the responses with great interest

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Thank you. Your reply sums up exactly how I feel. I've never not flared as far as I'm concerned. Its just degrees of flare!! I am better than I was, but nowhere near where I want to be. Hope you continue to improve.

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Great question. I would feel in remission when I am able to walk down a flight of stairs pain free. When I no longer have the intense pain flowing through. When I am on prednisone I feel normal, now I am off my body aches intensely. By the way those of you doing well, do you take any good supplements? All the best, Hessie 😌

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I know what you mean. Interesting that everyone has their own view on where they aim to get to and what is good enough isn't it.

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No supplements at all (apart from vit d when my levels drop). I spend my money on fresh food.

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I think at the moment I’m in remission. I’m on Erelzi biologic (etanercept) . It took 3 months to start working but now I feel almost normal. I still have to pace myself and I get tired if I do too much but I can do most of what I did before diagnosis. I expect I will have flares from time to time, but happy with that as I think that’s as good as it can ever get! I’m seronegative so bloods have never shown anything which makes an official remission difficult.

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Lovely to hear. So glad for you and long may it continue.

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I think this is an excellent question, although I don't have any good answers. I don't think inflammatory markers are necessarily a good indicator, or at least not solely. Mine have never been raised, despite being high positive for RF and having numerous swollen joints when I was first diagnosed.

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No mine too so all we can go from is physical symptoms. So frustrating!

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Reading this with great interest. I’m coming up to nearly a year of dealing with the pains and aches of ra and was starting to think maybe I expect to much improvement. It took over half a year thanks to full waiting lists to get a diagnosis of ‘mild’ ra from the consultant. Yet I’m now on the 3rd med and still having to rely on daily anti inflammatories to cope with my day plus extra pain relief most of the time. Was beginning to think I need to adjust my expectations but all above comments give me hope!

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Yes, I'm more hopeful now and aim for pain free and no swelling/stiffness. Living in hope!

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Do you mean you have taken 3 different Dmards in the last six months ...or that you are now on 3 drugs?

If it’s the former I’d have a word with your rheumatology nurse if I were you-most Dmards take at least 3 to 6 months to work and if you have flipped through three in six months that seems a bit extreme.

As you are finding out ..... all types of rheumatic disease take time and patience to find the right set of drugs for each one of us.

But hang on in there as most of us are lucky enough to get long periods of relief but as I have often found out, there are usually hiccups on the way.....& I was diagnosed 20 years ago.

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Hi sorry that wasn’t very clear. I started with quinoric which didn’t agree with me and now on sulfasalazine and methotrexate. Got a few more weeks left to see whether there will be improvement from adding mtx, sore fingers crossed!!

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Has you rheumy nurse told you that Mtx can take up to 6 months to really kick in?

If you are just not feeling much improvement, but not having really unacceptable side effects, it really is worth waiting it out.

It is often a case of how you think the drugs will work,& real life, where you have to take a step back.....& hope that tomorrow will be better than today.

Being constantly disappointed is very stressful ....so if you can look to improvements in say three months...not three weeks.....you may stress less.

Sadly nothing happens overnight with RA.

Lots of people live really comfortably on Mtx for many years, having toughed out the first few months. I had 7 really good years before it failed for me & I am very grateful for those years.

So try not to worry too much...there will be a drug regime for you ..so try to trust your medics,.....they really do want to help you..... make notes of your symptoms

so that you can tell your rheumy how you really have been..not just sketchy memories.

I hope you get a break through very soon.

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Thankyou for your reply and kind words. Hope you are on medication that works well for you now.

No I wasn’t told it may take up to 6months to work. I haven’t noticed improvement from adding mtx but as you say no side effects is a good start. It’s the day to day with young kids where I find it hard to accept the waiting and would give a lot to be my old self again for them. I’m just writing a list to take to OT and I’ve not taken symptom notes for a while so must get back to it.

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You will get there..but it must be hard with children to care for?

I know when I was first diagnosed I could hardly look after myself I would spend days in my pyjamas because I couldn’t move enough to get them off to get in the shower-it was a good job I lived on my own ......I would’ve been a nightmare to live with.

But look ahead & try to think about what you will do when your meds start working.

Take care

AC

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A good question and some very interesting replies too.

I understand a DAS28 score of less than 2.6 is regarded as remission by Rheumatology professionals but by definition that implies some joint pain/swelling and/or raised blood inflammation markers. Mine is 8.2 at present ☹️

When I can walk half a mile, do a full supermarket shop, get in and out of the bath unaided, play Bridge for 3 hours two evenings a week or go clothes shopping and not feel shattered the next day I will be happy and if that’s remission then I look forward to it!!

🤞🏻

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Haha thanks for your reply. Hope you get to do that! I didn't know that about the DAS score - not that I have ever been told mine (don't know if they've ever calculated it!!). But, like you I've got certain things in my mind where I'll think, yes this is good. We'll both get there!

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I have been asking myself if this is as good as it is going to get myself recently. I was diagnosed with sero-positive RA eighteen months ago. Took mtx and hyx then sulfasalazine for six months, then switched to lef due to side effects and at nine months was doing quite well about 85% normal. I was told to stop one hyx, and then in March the other one, with plans to reduce the sulfasalazine from my next appointment. But I flared and even though I am now taking one again I haven,t been as good since the beginning of May. I am nowhere near bad enough for biologics so I don't no what the next step will be. Sorry for going on.

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Hi and thanks for your reply. One thing that jumps out at me is that you were asked to reduce your dose quite quickly even though you were only 85% well. I hope that reintroducing hyx will help - everything seems to take ages to work with RA doesn't it. After being told MXT takes 6-12 weeks to work I'm now over 4 months in and am seeing a bit of improvement but not sure. Still relying on steroid injections to individual joints so we'll see. Hope you get the right medication and dosage soon.

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Always push for "normal".

I put up with bad pain for under 2 years because I just thought this was my life now, but thanks to some wonderful people on this site, they encouraged me to go back to Rheumy and request steroids... since taking them, I feel the best I've felt since my diagnosis in August 2017, this is all very recent and I'm still on the steroids currently until my MTX hopefully kicks in. I just can't believe I accepted my body in that way, some days I could hardly walk. So yes, always push to achieve your wellness, no matter how small x

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Glad the steroids are working and hopefully MXT will kick in soon. It takes a lot longer than the 6-12 weeks we are told I think (though for some lucky ones maybe that timescale is right). Yes, I'll keep going back to the Rheumatologist until I feel better. Am more determined than ever now! Thank you.

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It is a difficult one, but take one day at a time , and do things in a normal pace. I had a remission, and all my medication was stopped, and I was suffering a lot, my GP was very good, he changed my appointment a week earlier. Was very grateful for that.

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Thank you. Being in remission, having meds stopped/reduced and then RA rearing up again seems to be a common theme. It seems to be a long guessing game.....

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I don’t have too many flares anymore that totally incapacitate me for weeks and months at a time. However pain levels are chronic and I cannot manage without Fentanyl patches. I’ve never been pain free or anywhere like it and I have a really good pain threshold. My debility is just getting worse can barely walk anymore can hardly go out either, when I do even for an hour it will take me days to get over it. I’m finding that steroids are helping a bit and still early days for baricitinib (hoping to have dosage increased to 4mg soon). Plenty of hiccups recently and it doesn’t help that I don’t have an immune system now either. I’m still praying for things to get better and think there’s not much point moaning about it that’s not something I’ve ever done. I do miss being able to go out shopping occasionally and travelling without a military plan lol. So am I in remission? No not yet but some day 🤪👍

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Sorry that you are in so much pain, I hope the increase in meds will help. As you say, someday... Good luck.

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That's good to know. Thank you.

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I became officially in remission in January. I came off my meds as a result of a persistent cold I couldn’t get rid of in October, symptoms never returned so I stayed off the meds. I control through diet, gluten, grain and sugar are triggers, but so is stress and not enough sleep. I keep all these things in check and I’m symptom free, neglect something, I’ll get a little stiffness, usually hands or feet, nothing to major, continue to neglect my symptoms get worse. I’ll still be going for my yearly check up, just to keep an eye on it. I absolutely believe the meds reset my immune system by knocking it out and the lifestyle changes keep it in check, but it’s still broken, and always will be. I work 12 hour shifts in a kitchen now, which I couldn’t before. I have two boys 4&7, which I can now keep up with. I like to think with the changes I’ve made I’m more able than I was before the diagnosis

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That's fantastic to hear you are in remission and great that you know exactly what to do diet/lifestyle wise to keep it that way. To read that you are able to work 12 hour shifts and keep up with young children is just great and very inspiring. Thank you.

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From my experience I have days I can go up an down stairs no problem no pain. I can move around more an enjoy myself thinking I was in remission or something. But the next day, I was in pain, couldn't hardly walk. Didn't want to be bothered for about 2 days. Then I start feeling better. Now I know no matter what day I feel good I going pay for it next day or two maybe 3. Its rough sometimes.

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Yes, RA is a rollercoaster sometimes and so tricky to predict what reaction we get. Its different on different days as you say, and so frustrating!

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Yes it is frustrating

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My rheumy declared my remission in Nov 2015. However, though I was pain free then but I was still weak in my movement as I worried about my fingers and toes. Now, I am very much stronger each day and I think I can do almost everything pre RA beside feeling my fingers and toes are still a bit different.

I had an appointment yesterday and I asked my rheumy what next? She suggested to cut down my Arava. But when I complaint to her about the feeling of my fingers and toes, she said that it could be due to Vit-D deficiency hence suggested a blood test on that.

The plan now is if Vit-D test is fine, then she will continue the DMARDs until my fingers and toes feel better. If the Vit-D test is not okay then she will stop osteocap and replace it with 1,000 mg Vit-D for me. She said that osteocap is for maintenance purpose, whereas the 1,000 mg is for topping up purpose.

Yes, I can do almost all the things I did pre RA but not as strong my hands and legs.

Amy

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Thanks. It's good to know that, with the right medication its possible to get very close to your pre RA self.

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