Remission vs controlled disease

[Mostmoses]

Hi, all. This isn’t as pressing or important as most posts, but if I may, I have a question regarding semantics. I think that remission means that one feels well-and doesn’t require ongoing drug treatments. If this is correct, I am not in remission, as I’m on Cimzia, but no steroids or other RA drugs. I get a few aches and pains, a bit of fatigue, but am generally functional at a near-normal level. But maybe I’m wrong about what remission means, because I see people writing about being in remission tho still on various meds. What’s accurate here? It only matters in terms of how I describe my condition when I talk to others. TIA

[MadBunny]

I am also on Cimzia . I'm always told by the consultant or nurse I am in remission, and have been since I started it 10 yrs ago. However, I do still get minor flares occasionally although for most of the time I'm able to do most things comfortably. Pre Cimzia I was in a bad way( info in my profile)

I'm no medic, but the way I read it , in RD terms , I think being 'in remission' means the disease is 'well controlled ' while remaining on the drug, which is needed to keep you in remission.

I may be wrong, but as I understand it , if I was to come off the drugs , I would deteriorate again. I have noticed a deterioration if I've had to come off it for any reason eg dental surgery, covid jabs.

I tend to use the term ' well controlled' if I'm talking about it to others.

Hope this helps x

[Mostmoses in reply to MadBunny]

Many thanks! Your description is how I’ve been reading it. I am also reassured a little to hear that cimzia is still working for you ten years on. It’s been two years for me, and about 10 months off steroids. I’m not perfect, but generally pretty good, so kudos to cimzia! Thanks for your reply

[MadBunny in reply to Mostmoses]

You're welcome. Yes It's given me my life back. I'm still on 20 mg methotrexate as well. The nurse wanted to reduce it further but I didn't want to risk it. Maybe I should consider it. Long may it work for you ! 🤗

[AgedCrone]

If you Google “In Rheumatoid Arthritis what is generally regarded as remission” ?

You will find, there are many, many definitions….so just take your pick & choose whichever you feel ticks all the boxes for you.

I consider myself to be controlled ……I take just one drug annually I have relied on just that medication for the last seven years.. ..for me that could be considered remission.

However, I was on a different drug for seven years and that failed ….so I wasn’t in remission .

In fact I think it is whatever you personally consider your condition to be. However..if your rheumy agrees with you…..that could mean you hit the jackpot?

[ruth_p]

As a chronic illness RA doesn’t go away on its own but can be controlled with medication. This is being in remission. Only the very few lucky people end up without any medication. What you’re describing is remission.

[Paula-C]

I've been in remission since early 2013 but it's my drugs (mtx and enbrel) that have done this. The odd times I have had to stop drugs for a few weeks my RA starts to rear its ugly head. RA can, but it's very very rare burn itself out and just go away.

[smilelines in reply to Paula-C]

I did not know that RA could burn itself out and just go away.

[Paula-C in reply to smilelines]

There's a lady who is admin on a RA Facebook group that I belong to and it's happened to her. It is like I said previously very very rare that this happens.

[smilelines in reply to Paula-C]

well, if our bodies can suddenly change for no apparent reason to give us these diseases it makes sense that sometimes it changes again and a disease can change or go away. 😀👍

[Mostmoses in reply to smilelines]

I guess I could hold my breath on that…

[smilelines in reply to Mostmoses]

if only, eh!

[stbernhard]

Hi Mostmoses, I consider myself to be in remission when I don't even think about RA in my daily life. Which is most of the time. The medication helps me to stay this way. I'm 75, very active and would get the odd aches and pains anyway, RA or not. Have a wonderful day!

[Gymcactus]

I'm considered to be in remission too but would not risk stopping medication as it is those that enable me to live pretty normally. I have had medication reduced and thankfully it made no difference.

[WillowsMother]

I'm also in remission, and only taking 5mg of Prednisolone daily since Nov 2022. It feels like a miracle, but Dr's say it's likely because I went through intensive chemo for Acute Myeloid Leukaemia, which completely re-set my immune system. I'm now on a maintenance chemo drug which is not used for RA, but also dampens the immune system, so it could be that and the pred are keeping my RA under control. It's been a rough old journey that I wouldn't recommend to anyone, but putting my RA into remission (plus growing back my thick wavy hair that RA drugs had ruined) is my silver lining!

[Gottarelax]

I think it is a difficult topic that means different things to different people. For me, I guess my Rheumy would say I'm in remission (well he's not looking at changing anything)...but the word remission suggests to me that you are functioning like you used to do before the disease hit (albeit controlled by medication) and that couldn't be farther from the truth. That my CRP levels are normal and I don't have joint swelling/active inflammation is probably the accurate description of this 'remission'. So for me, being in remission means that I can do all the things that I 'have' to do but fewer of the things I want to do. For example -yes I can walk, but for a limited time and mainly on the flat, yes I can blow dry my hair but I can't style it at the same time and it kills my shoulder; yes I can get up and down from the floor but it takes so much effort that I try to avoid and it may result in a sharp squeal if I get it wrong; yes I can still work, but that's just sat at a computer all day. As for getting back on a horse and riding, I can but dream. Then there is the fatigue and general body pain that has to be just ignored to keep functioning. I'm not complaining as I know I'm doing better than a lot of sufferers but I think it needs to be understood whether or not this is what remission is supposed to look like and when it is appropriate to draw a line under expected level of recovery and or to reconsider of medications.

[Mostmoses in reply to Gottarelax]

I also was a rider for many years and can’t really even contemplate riding these days. I guess I’m just glad I had so many healthy years and also glad I’m functioning and able to enjoy calmer quieter activities these days!

[Gottarelax in reply to Mostmoses]

Yes, I too am grateful for the healthy years and being in a position where the illness hasn't robbed me of my job as it might have done if it struck when I was younger. It was horse-riding that suffered first. Years before I had any idea of having RA, I would have to take painkillers before riding or my legs would be in agony by the end of a ride. In fact, last time I rode I took a tumble while cantering as my one leg just suddenly seized. I don't know why I didn't think to investigate but it only ever affected horse riding back then.

I took a look at your bio and think that your onset was probably similar. I was sure that, although on the young side, I'd developed PMR (family members have it). However, when I had tests done, I was seropositive. My consultant calls it myalgic onset RA which is apparently a common feature of the onset of RA in over 50s.

[Mostmoses in reply to Gottarelax]

Thanks for commiserating We all have to find our own ways through this but it’s reassuring to find someone who shares some similarities. I was a professional rider for a couple of decades but changed careers well before the RA, and rode only occasionally. But in hindsight, I did notice undue weakening in my leg muscles early on., which I attributed to just losing my riding muscle. That indeed might have been an early sign. I was adopted and don’t know of any autoimmune disease in my blood relatives (I do know some of them now). I’ve been mildly interested in research studies indicating that autoimmune sufferers of today may be descendants of survivors of the Black Plague of the 1400s. It’s not useful info, but for an adoptee like me, still interesting

[smilelines]

My doctor says we can stop all medicine to see what happens but if I flare she may never be able to get it back under control. So I think remission means we are very functional because our disease is controlled by medicine. Remission without medication seems like it should be called a miracle.😀

[Mostmoses in reply to smilelines]

Good point!👍😀

[Thingybob]

My rheumy nurse says remission is when your drugs are working and you have had no flares for 12 months .My dad had RA , took a short course of steroids . No other meds available at the time! His " went away" but he had flares regularly and was always tired....i used to wonder why lol

[Mostmoses in reply to Thingybob]

We are fortunate to have better drugs for sure (as I march off to inject my bi-weekly cimzia dose). I do truly appreciate the drug, I swear, but I’m always very stressed about injecting stuff into my body. I am unable to fathom how anyone injects a substance that is less than absolutely necessary!!

[Thingybob in reply to Mostmoses]

I totally agree. I get worked up.every friday ( jab day ) . Its a necessity and appreciated but still goes against instinct