Remission : Ok so who is in 'Remission'? How did you... - NRAS

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Remission

Ok so who is in 'Remission'?

How did you achieve it?

How long did it take?

Do you have ANY symptoms at all now?

Would you say you feel like you did before RA?

I'm working a way towards the great R word steadily with medication. My Rheumy nurse tells me that this can sometimes be achieved with the correct meds etc. What I would like to know (she can't answer this as she's not got RA) is when you are 'in remission' do you have ANY symptoms at all?

Look forward to reading your experiences ❤️

60 Replies

Sorry i can't help you with this one darling. Hugs. xxxxx

I’m supposed to be in remission or I was at my last appointment two years ago in September. I’ve got inflammatory arthritis and I take 200mg hydroxychloroquine a day.

I went completely gluten free about five years ago when I was first diagnosed whether that could be helping I don’t know. I’m sure it keeps my CRP down though.

I do know that I feel pretty creaky these days - and did when I was told I was in remission- along with lots of muscle pain - probably worse now than back then - so I’m not sure if I’m still in remission.I do think being totally GF helped me though.

I am 3 days into a GF diet following advice from a friend - her son has RA and said it had helped him. Waiting to see what happens 🤞

in reply to Gilliancheche

Excellent. Please keep me posted 🤞🏼

Look at the coeliac.co.uk website. It is well worth joining to get you started. You get great information online and you also get their ‘food bible’ listing what seems like every GF food and ingredient known to mankind. Plus online access to all sorts of support. Worth every penny it costs.

I went GF a few weeks ago as I was told to stop taking Methotrexate because I t was causing impossible bowel problems. I tried GF in desperation and it has definitely calmed things down. I feel so much better. Unfortunately my RA is making a comeback big time so the GF hasn’t helped . I also have Fibromyalgia though.

When I was first diagnosed I went into remission really quickly with MTX. I lived my life as normal extremely active and I thought this was it I’m going to be fine. 2 1/2 years later OMG all hell broke loose it’s taken over 2 1/2 years to get where I am now joints much better but have some damage and I’m a shadow of the person I was . I’m no longer active gave up my dream job reduced my working hours to 2 hours a day and lead a very restrictive life . Now have fibro too as well as Sicca. I though I had it licked 😞

Caza profile image
Caza in reply to J1707

That’s sad. Feel for you x

smilelines profile image
smilelines in reply to J1707

So sorry.

CripLady profile image
CripLady in reply to J1707

Sorry… x

Remission is defined as a DAS28 score of less than 2.6 according to the "Know Your DAS" app and the stated implication is "usually no action necessary except remain on the current medication." So from this one can deduce that it does not necessarily mean all symptoms have gone.

For some of us who have very aggressive disease and are sero positive I understand remission may never be achieved. 😞 Well controlled disease with low disease activity (DAS 28 from 2.6 to 3.2) may be the best one can hope for. I'm now in that category and still have some symptoms but it's a huge improvement from where I started!

Also, although inflammation could be very low, if it took a long time to get the RA under control other problems may have developed. In my case osteoarthritis and osteoporosis. I think to go back to how one was prior to getting RA is very unlikely for most people.

in reply to Lolabridge

TY lolabridge

Mmrr profile image
Mmrr in reply to Lolabridge

Remission may never be achieved for sero negative people either, there are a number of us on the forum who really struggle to get a med that has a positive effect on our RD, far less remission.The post yesterday about recategorising RD, suggests that seronegative RD may be more difficult to treat and has poorer outcomes than seropositive RD.

CripLady profile image
CripLady in reply to Mmrr

Just seen that thread. That’s terrible… ‘opinions’ governing your lived reality. Didn’t get that with RA but did with Fibro… I personally think being a woman doesn’t help.. Have just bought a book ‘Unwell Women’ which gives the history of ‘us’ being ignored… Yet to open 🤨

Mmrr profile image
Mmrr in reply to CripLady

I've struggled since day one with GPs and rheumatologists who have not believed me due to my seronegative status, who tried to fill me with antidepressants and sleeping tablets....thank goodness for professional physiotherapists and podiatrists who took my issues forward. After a 2 year battle and a change of rheumatologist, I began to see the light of day. My RD is still not well controlled but I'm 'better'than I have been, on advanced therapies but the disease marches on.

Women regularly have a harder time to be taken seriously regarding health concerns than men.

Yes I take AZA and Benapali and have no symptoms. No pain or swelling and my fatigue which isn' t that bad is down to kidney disease. So yes thats remission. It's been since Oct 2018, prior to that remission with LEF for many years but sadly due to an AKI it had to be stopped. I do think that being sero positive might make it easier to treat and possibly make someone more treatable.

I was told that I was in remission because my DAS score was low and especially because my blood results showed no inflammation. However, I didn't agree as I was still getting flares... and later had one enormous flare where even they had to agree!

in reply to oldtimer

Interesting.. my Esr is down to less than 5 but I still ache? It's nothing as bad as when it first came on and I took ages to show in my blood that I had RA. I think my highest was 43.

Thank you all. I will look at the DAS ad I've not heard of it. My experience of RA was at first very painful. I'm on injectable MTX and Sulfasalizine and the pain isn't as bad as it was at first but there are days where I feel like my joints are burning. Today it's my right wrist and fingers. My two knuckles on both hands have a mind of their own and some days my middle finger wants to point towards my little finger? My hands on other days feel completely normal. It's such a bizarre disease with no pattern at all.

I wondered if those in Remission still felt like they had RA or is it just to a lesser degree?

Also there are people who talk about diet etc.

Yesterday I was at my nieces party so had 'party food' I wondered if that had caused today's burning pain? 🤯

I have been in remission since 2005. It took about 18 months from my first symptoms. I became very ill, very quickly whilst on a hiking holiday in Peru. The doctor in Peru suspected RA but I tested negative on return to the UK. Initially I was diagnosed with inflammatory arthritis triggered by some unknown Peruvian virus and was sent away and told it would subside on its own. It didn't, six months later I eventually saw a rheumatologist, he was superb, I was immediately hospitalised and a raft of tests were organised. He quickly said, "I don't care what the bloods say, this is RA and I know what is needed to get you doing all the things you used to do." He then said he wanted me on Humira but we had to jump through the NICE hoops to get there. He pushed me through those hoops as fast as he could. I felt the benefits of Humira very quickly and have been stable ever since. I have had no flares since starting it. I now do all the things I did before; hike, ski, garden, cycle. I still get tired and don't have as much energy as before. Also, some joints were damaged whilst I jumped through the NICE hoops. I know I have been very lucky with my response to medication (long may it last), and I was exceptionally lucky to have consultant who pushed to get me on Humira at a time when it wasn't easy to do so. I am now on MTX and Amgevita and swear by my orthotic insoles.

in reply to Potatos

Wow. Sorry to hear that you had to go through this but amazing to hear you're in Remission. My Rheumy has suggested a biologic but I amWaiting to see a consultant which will be around October 😁

If remission is feeling normal then I’ve never been in it I have learned to live my life to the best I can 👍🏻

After the first awful, awful year I have largely been in remission for the last 10 years. Blood work is of little use since I have naturally low inflammation markers (even with obvious signs of inflammation).

In general I have no tender or swollen joints, unless I overdo things badly. I don’t have the energy I used to - but then I am 10 years older so not sure I can blame everything on RA. And overall as long as I take my drugs, get proper sleep and generally look after myself the RA is just something I am aware first thing in the morning and last things at night. Generally merely slightly uncomfortable for a few minutes, sometime worse and for longer.

What gives me far more pain is the osteoarthritis in my cervical and lumbar spine, and knees.

in reply to helixhelix

Have you tried GLC2000 or imove as a supplement?

helixhelix profile image
helixhelix in reply to

I eat things like home made shellfish stock, mushrooms, sweet potatoes and a generally fishy diet (mussels are a sustainable seafood) and so on so get all the things in these supplements through my diet. Prefer to spend my money on things that taste good, and are good for me, than tablets.

According to my last letter from rheumatologist to GP, I’m ‘in remission’. As others say, it seems to be defined by DAS score and inflammatory markers. I’m on methotrexate and hydroxychloroquine. Whilst I think my pain levels are mainly fairly good, I still experience debilitating fatigue very regularly, and this remission has only been achieved with me reducing my working week to 3 days. I know with certainty that I would be very unwell if I go back to full time (I’ve attempted that several times). I will say that a recent adoption of a low carb/gluten free diet, and low sugar has helped my health enormously. If I have anything high sugar I in pain in my joints within just a few hours, so Mediterranean diet seems to be my friend!

barbieg profile image
barbieg in reply to girli1969

I’m glad you mentioned low sugar as well as GF diet as I am an both but wasn’t sure if the low sugar would help. I felt it did but wasn’t sure if it was just my imagination! I also can’t stomach lactose so I’m using dairy free products. I’m sure the Methotrexate was the culprit for me, but then I am odd as all my friends would say 😂.

Rachmaninov2 profile image
Rachmaninov2 in reply to barbieg

Am I right in thinking that Methotrexate contains lactose?

barbieg profile image
barbieg in reply to Rachmaninov2

I’m not sure but it is in the folic acid you take with the Methotrexate. My consultant tried me on a liquid folic acid but I still had problems.

Rachmaninov2 profile image
Rachmaninov2 in reply to barbieg

Thank you, I didn’t know about folic acid. I’ve just looked up Methotrexate and it contains lactose too.

barbieg profile image
barbieg in reply to Rachmaninov2

I didn’t know that. It makes sense now. Thank you.

Rachmaninov2 profile image
Rachmaninov2 in reply to barbieg

You’re welcome, we’ve helped each other to add another piece to the jigsaw. 🙂

barbieg profile image
barbieg in reply to Rachmaninov2

Yes, it’s large jigsaw though isn’t it. This forum is wonderful for knowledge. I’ve learnt so much although I’m one of the ones that’s reads from the email I get once a day and only add a reply to things I know about. I’m a silent member .

Rachmaninov2 profile image
Rachmaninov2 in reply to barbieg

The picture on the jigsaw seems to be ever changing as well. It was lucky for me that you replied to girli1969, where would we be without these forums. BTW, lactose is a sugar.

If you are on tablets then they will contain a tiny amount of lactose. This is a filler for many tablets (including folic acid).

There are alternatives for people who are diagnosed as being allergic to milk products.

And for folic acid some people need to take it in the form of folate, not folic acid.

Many thanks for that info. helixhelix. Do you know if Prednisolone contains lactose?

You have to check each brand but some certainly do

Prednisone Tablets, USP contain the following inactive ingredients: lactose monohydrate, magnesium stearate, microcrystalline cellulose, pregelatinized starch, sodium starch glycolate and stearic acid

If you look at the leaflet that comes with your pills it will tell you what the active and inactive ingredients are.

I appreciate your help, I should have thought of doing that myself.

😀

barbieg profile image
barbieg in reply to helixhelix

Yes, I bought Folate but didn’t get a chance to try it because my consultant told me to stop the Methotrexate immediately. She wouldn’t even let me try injecting Methotrexate . Hence I’m left with no medication till it’s out of my system. I have to add I also have Fibro and IBS.

Hi. I am in remission. I have been for about 7 years now. I still have to take mxt. I still have flare ups but not all over my body. My flares are usually when I have overdone something like gardening or been bending too much etc. Of course I am well aware that it is drug induced remission and I will never be free of the meds so I am very grateful to the many people in the medical and scientific profession who have made my life not only liveable but comfortable, most of the time. I can still have very painful flares but being in remission, in this sense means fewer than 3 joints being affected at one time. It doesn't mean it has gone. I know from extremely painful experience that coming off the meds, a few years ago, during a breathing problem, caused me to be bedridden and needing lots of steroids and painkillers for several weeks. Thankfully the breathing problem wasn't anything to do with mxt so I could go back on it and eventually settled down again. I would not want to do that again. Thank God for my Rheumy team and mxt.

Sadly wouldn't as never been in that position

Difficult to say. When it was 27 in summer 2018 n ll the joints were very painful and MTX cleared most of that up in 3 to 4 months but latterly he effects of wear and tear on 83 years old bones and a prolapse at L3/L4 make a sensible reply difficult

I should imagine everyone‘s expectation of Remission is different & if that expectation includes feeling 100% like you did pre RA…I think you are on a hiding to nothing. It may happen to some with a mild disease…..who find the perfect treatment for them in the first couple of years …..but not many people report that on here.

I think remission is technically described as remission when your DAS drops to a certain level & your medication is stable.

Since 2016 I have been on Rituximab & I feel 100% better than I did.But I don’t think about whether I’m in remission…I am just grateful….Prior to Rtx, I’d had 7 good years on Mtx…..& had a very good quality of life..but yes I still had flares…& I still do….but not often…..& they don’t last as long….& I just accept they are part of my disease pattern….I don’t hanker after living drug free…because realistically I don’t think that is likely to happen.Over the last 20+ years….I dutifully swallowed the drugs I was prescribed… & when I asked my rheumatologist about diet he said eat what you enjoy, but avoid too much red meat…..luckily I’m not a great meat eater…..so I do as I was told & eat & drink what I feel like.

It’s probably unrealistic to expect to feel the same as you did pre RA…after all- we all age….. looking around, I don’t seem to be much worse off than they my peers…..& in fact a lot better than some.

So I’d keep taking your RA meds & if you think they aren’t all you need - ask your rheumy nurse - is there is something else that might help …..then enjoy your life as it is…don’t be on a mission looking for perfection….after all…how will you know when you get there?

Mmrr profile image
Mmrr in reply to AgedCrone

I love that AC....is…don’t be on a mission looking for perfection….after all…how will you know when you get there?

My mantra too, a good job, well done...move on....

AgedCrone profile image
AgedCrone in reply to Mmrr

I don’t care what they call it …but if I’m not in pain I’ll settle for Remission!Then. … when it comes back I just think “here we go again”.

Life is too short to search for something ….when you don’t really know what you’re looking for!

Enjoy the good times…forget the bad!

I am in remission and have been for over 12 years. My RA was very aggressive within 2 years of diagnosis I was hardly able to walk and in constant pain. I was losing weight and very unwell. I was lucky to be put on biologics and for me it changed my life. I am not saying I am 100% but I don’t expect to be. I stay active, eat well, work.There isn’t a lot I say no too😂. I have damage to my wrist and hands and most days after being on my feet they are painful to walk on. I also have a very mild form of ILD and early kidney problems( neither of which bother me too much). I do count myself as very lucky that mine was controlled early and I know other people that aren’t 😔

Interesting to read the responses - I think that I must be in remission 🤞I was diagnosed in 2019 and have been on my current medication for several months. I had some problems last year which prompted various medication/dose changes but currently have just a bit of early morning stiffness and occasional twinges.

My energy levels are pretty good; I don't work as many hours as pre-RA but I had cut down previously due to struggling to do as much which might have been the RA beginning to affect me or might have been my age (I'm 61.) I suspect it was the RA as my friends seemed/seem to manage to do more than me but I'm quite happy to be doing as much as I am and to be feeling this good - definitely a "count my blessings" situation! 😊

Definitely agree with this. I was diagnosed only last year and was horrified after frantically googling the disease. It good to hear about people who continue to lead a normal life. Good for you 😍

I was diagnosed with seronegative inflammatory arthritis in 2016 and prescribed hydroxychloroquine 400 mg per day which took about 4 months to kick in . Now I am on 200mg 3xweek so reduced to a quarter dose . I have not had any blood tests since but am pain free and pretty much back to normal . It feels like remission but I havn't seen a rheumatologist for 2 years due to the pandemic to confirm it.

I have had RD for about 18 years and am now in remission which started about 4 years ago. I wasn’t aware at the time that you could go into remission and was surprised when my Rhuematology nurse did all the usual checks at my twice yearly appt told me I was in remission! I have no symptoms , and have in the last couple of years or so have started to reduce my medication under the supervision of the consultant. I am now on 5mg methotrexate a week having come down from 20mg , and 1000mg sulphasalazine down from 4000mg. I take Hydroxychloriquine and Cimzia biologic.

I try to keep active and go walking or to the gym regularly, don’t drink and eat healthily.

I think being on Biologics has really helped me to achieve remission , but I don’t take it for granted that this will remain the case , but take each day as it comes!

in reply to Colouringqueen58

Brilliant!!!!

I can’t help you because in 17 years I’ve never been in remission!

I was eventually diagnosed with sero negative RA, in the late 1980s. I was so ill, couldn’t walk, spent nearly a year in hospital. I got a little better but was struggling to function and still in much pain until I was started on biologics but only was in remission for many years once I was started on Enbrel (Etanercept)/injections. This was the very best treatment for me which I had for 14 years. However it stopped working after I had 2 total knee replacement operations in 2017/2018. Have been on 2 new biologics since then which are not really working… am on Tocilizumab atm. It was wonderful being in remission as I could walk again long distances, did gardening, tai chi, being very active generally and able to live a more or less “normal” life. Not the case now as I am losing my mobility and independence. Do hope you can get into remission soon.

I am in drug-induced remission with the help of mtx and biologics.

Do I have any symptoms? Yes as some of the damage has been done and there's no going back from that unfortunately. Do I feel better? Definitely! I've not had any flares in two years. Thankfully, I've never had any infection at all - hope I haven't talked either of those up!

The RA started 5 years ago and went from nothing to not being able to function within 5 weeks. Couldn't get up one step, off a chair without 20 attempts, couldn't hold a pen/cup. Nothing. Horrible pain and took steroids for almost two years. Biologics were the turning point and I've not looked back since.

I also eat anything and everything. Tried AIP and was even more miserable than when I was in the worst pain. I had no life at all and it changed nothing. Eurgh!

Hopefully you'll find that sweet spot too.

I am in remission and have been about 3 times during my 39 yr journey. Unfortunately it has taken its toll on my joints….fingers and toes especially and now my knees arent perfect. I always say…yes I am in pain, but its manageable with the oral pain relief I have, to top off the Rituximab infusions. I have got my life back, albeit with limitations. I think for people being diagnosed with this condition now, they will definitely have a better quality of life with the medications that are around now. Good luck

Was on Inflectra infusions for 4 months. Made me tired and sick. Dr said it would raise my already low white blood count and reduce severe inflammatory. No change in white blood count or inflammation. She said I need to start injections of new med. Two injections are $9,000 with my part being $4,600 out of pocket. Don’t even know if it would work either. I don’t think I’m going to do anything but live with it now and manage. I’m 65 and on borrowed time anyway. I believe the best meds is just keep moving and don’t take to the bed for those struggling in finding the right meds. My 38 year old daughter also recently diagnosed with RA. Good luck and prayers to all who suffer with chronic pain.

I've never really worked out what 'remission' means - I suspect it means different things to different people... To me it means a total absence of disease, as in when cancer is eradicated in someone - so I wouldn't expect to achieve that as RA is incurable. I'll settle for (mainly) pain free days, good movement and no stiffness and I think to some people that would count as 'remission'. Interesting that other replies refer to being in remission but still having occasional flares - I guess that refers to my point about remission means different things to different people.! I just want to be well enough to live my life without pain - I don't really care what that's called!!!

in reply to Dobcross1

It's a term my Rheumatologist and physio used so I think it's used in the Rheumy world so to speak. I was told by Rheumy nurse that remission should feel 'symptom free like you don't have the disease'

That's what I'm working towards anyway 😁

Hi, what is remission? I was officially diagnosed in February of this year, didn't get my meds until June and whilst my symptoms have eased I'm still in pain and my knees are stiff, worst 1st thing in the morning. Look after yourself, we are here to support you.🐕🦄

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