I thought remission meant actually being able to come off all drugs because you no longer have any flare. But my sister thinks it just means that the drugs are working well enough that you no longer have pain or symptoms.
That we are still on medication for life...
By my research, I believe that your Sister is correct. There are very few “spontaneous” remissions. It appears that “remission” is defined as zero/low disease activity, with possibility that a reduction in medication level could occur. Cheers Deb
It depends...like everything RA! Some people are able to taper off drugs once the disease is controlled, and stay off them for months, years and sometimes forever.
For others, which I think is the majority case, you have to stay on drugs. I am back in remission now - no pain, no swellings, all fine for most of the time. But I have learnt my lesson as I have got to this point several times before and tried to come off drugs and it was never a success. I am hoping that I will be able to reduce the doses a little, but don't have any expectation that I will be able to come off them completely.
Thanks xx
My sentiments entirely. x
I have reached remission a few times and have taken a “medication vacation” and have remained without symptoms for close to a year at a time but, I regret not at least staying on a low dose of something because each time Arthur has returned really pissed and I have suffered the consequences Worse each time. I hate taking the mtx because it makes me so sick for a full 24 hrs after and I am dreading it more and more each week. I’m hard headed and think I don’t need the meds when it’s so obvious what will happen when I don’t take them. You’d think being a nurse I’d have more sense.🙄
When I was told i was in remission, it was when I had been on the drugs for a few years with no flares or disease activity or pain, at all. So they weaned me off the meds to try to go med-free for a while, and I stayed disease-free and med-free (so in remission) for 4 years (that was my longest period). Other times, I came off the meds and was in remission for up to a year or two. I think it can be achieved it's just finding the right medication to 'put RA to sleep' for a while. Good luck!
Seems I’ve never been in remission before then. Never been able to reduce drugs, only stopped due to side effects, before new ones were added to the mix. Started tapering the steroids the last few months so maybe it’s my time 😊 Only took 28 years. Making me feel very sad.
Oh that is sad. But still stay positive that the drugs are actually working xx
I think your sister is meaning clinical or medically-induced remission. When the meds are working well enough that you have no symptoms. You are meaning remission where you can come off all meds. So you're both right but afraid to say your understanding is less usual as spontaneous remission is more rarely achieved if you like. I do wonder of those who reach spontaneous remission if they were ever diagnosed correctly initially, though as I say it is still possible even with a definitive diagnosis, just less usual.
What we mustn't do with medically-induced remission is stop our meds. Whilst we may feel as though we're RD-free it's the meds keeping us there. More often than not we remain on meds for life... unless there's a cure found in our lifetime but don't rely on that, even though they're working on it it's not imminent. It may be possible to reduce doses but if symptoms return we must advise our Rheumy to avoid going into full flare.
I would never reduce medication unless advised by my specialist. In two years I have only had my hydroxychloroquine reduced a little. My MTX and sulpha remain the same. X
Me neither, not advisable. I meant under the direction of our Rheumy or nurses. x
It has been shown that remission without meds is very rare. Medfree remission seen more in pas on biologics with no previous mtx therapy. So this seemes to be ruled out since everyone needs to try mtx
The only time I got close to any kind of remissio, was when I had Cancer. Stopped MTX but continued Leflunomide, and of course the dreaded Chemotherapy which consisted of 3 drugs. 5FU, Cyclophphamide and Epirubicin. All three one after the other, on a three week cycle. 
I was pain free all the time, but there were other problems.
Have heard this before that when you are on chemo for cancer it calms down RA. The chemo used in cancer affect the prolifiration of cancer cells but also other cells in our body as well as cytokines that cause inflammation. But as you said these strong chemo meds cause other problems. Simba
Remission is when the signs do abate and maybe disappear completely for a variable amount of time. Your sister is wrong, what she is describing is treatment working well but not necessarily curing the condition. As yet, there I no cure.
Exactly as NMH said it! 😁
If you come off the RA meds you mostly start to flare again and if you are prone to joint damage quickly (I am!) then you could be even worse off and take a massive backwards step, but I understand those who want to try. I have just seen my endocrinologist re my Graves disease (over active thyroid) and he was talking about stopping my thyroid med as I have weaned down and have perfect thyroid function blood tests for such a long time. He said we will discuss again but I am not sure. Feel I need to be on the smallest dose of med for that indefinitely even though I feel in myself it wont return. Undecided, but that's a similar dilemma. For the RA ... I feel mine will be back with a vengeance if I tried to stop Rituximab.
Remission in regards to RA is quite confusing and not necessarily the same definition that would be used for other conditions.
Remission basically means very low disease activity levels, often measured using DAS (disease activity score), where a level of under 2.6 is generally considered to be remission. In some conditions, remission would mean the condition is completely gone, while in RA, it is a life-long condition, so it always there, but can be at low enough levels to be considered 'in remission'.
In terms of medication, rheumatologists do not want RA patients over medicated, but they don't want them under medicated either. Therefore, a typical approach when someone is in remission is to start tapering down their medication levels. This might mean removing one drug if someone is on multiple DMARDs, or just lowering the levels of drug(s). This is normally a gradual process and in some cases it leads to someone being drug free (though they could come back out of remission at any time, so may need to go back on to medication) while in other cases, the doses or frequency are likely to have been lowered, but they may not manage to get you off all medication entirely, while keeping the condition in a state of remission.
Remission is often considered to be 'drug-induced', but this does not necessarily mean that the person no longer has pain or other symptoms. In some cases this might occur, but unfortunately it's not uncommon to still have some symptoms in remission, though again, usually at lower levels.
Hope this helps.
Victoria
(NRAS)
Very helpful. Thanks xxx
I think what a lot of us are realistically aiming for is what's called 'chemical remission'. Guess it then gets shortened to remission which is 'pie in the sky' for most of us.
I agree with your sister, symptom free but on meds. x
I will say this simply (for me anyway, I don’t reply too often as not as knowledgeable as a lot of you as am new to this and I’m known to say things in a long winded fashion much to my husbands dismay🤣)
Remission for me is whatever allows me to live a close to my pre-diagnosis days as possible. We have an autoimmune condition-our immune systems will always attempt to go haywire, whatever keeps that at bay is remission to me - and may we all have as many “good” days as possible xxx
Hugs to all x
I was diagnosed in 2011 with RA. My flares were so bad I would cry for hours with ice packs on wrists n shoulders however I began mtx along with folic Acid and another I can't recall. On the third day my ears went crazy, they call it tinnitus. It scared me so bad I quit taking all meds until it came back and almost killed me , (pain wise). The hissing in my ears stopped for almost 5 years even when I had to start the mtx again. So, after 5 yrs the tinnitus came back and is here 24-7. thank God ive earned to live with it almost 3yrs but its not fun. In closing I wanted to comment on the remission thing...I'm not sure what's going on with my RA but about 2 yrs ago I decided to stop the mtx but doc kept me on oxycodone to control everyday joint aches n pain, plus I felt it wasn't helping actually and it's a hard drug. that said, I've not taken any meds in over 2 yrs just the oxy, 10mg 4 times a day. had only one small flare, my RA doc says she can't explain it but to knock on wood because I still have an RA factor it's just not active. I have become dependent on the perks but they keep me moving. Damned if you do and damned if you don't. My question is can this disease be affecting other organs in my body without me realizing it, or am I good? Thanks...
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