Ra sufferer: Hi everyone I think most people know me by... - NRAS

NRAS

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Rocky07 profile image
6 Replies

Hi everyone I think most people know me by now I just have a question how many people have gone into full remission from ra and what treatment s and how long

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Rocky07 profile image
Rocky07
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6 Replies
Jacki08 profile image
Jacki08

Hi Rocky-- I don't know if I was classed as " in remission " -- but got my life pretty much back to normal after being on mthx for 12 months. Unfortunately had to come off it due to side effects. 😊

helixhelix profile image
helixhelix

Not an easy question to answer as remission can be defined in different ways and doctors use different criteria for it such as DAS levels or ACR definitions.

The most useful research I've read suggested that around 40% of people have persistent disease, and the other 60% have a relapsing-remitting pattern of disease so it comes and goes, with periods of remission that can be variable length and may be chemically maintained (i.e. still on drugs) or drug free.

But even those with persistent disease can live ok, as it just means there's still some disease activity not that you are in permanent agony. The DAS score for example sets remission as below 2.6, but I spend a lot of my time with a DAS slightly above that but consider myself to be in remission as it feels bearable.....

Only a very small percentage of people seem to be able to maintain remission for more than a couple of years without drugs, and I've not found research that really explores that in detail and differentiates between reactive arthritis (that goes away) and RA.

AgedCrone profile image
AgedCrone

I asked my Rheumy this......he's a senior rheumatologist in his 50's ......when I seemed to be doing well on just the odd Depo injection.

He rolled his eyes & said he'd never seen it happen,.

In my case he was right.....I had a big flare .....and am now on Biologics.

I now work on appreciating every pain free moment & just hope the latest meds continue working.

I'm not throwing cold water on the theory.....but I try not to spend my life hoping it will happen when it is so rare......enjoy the quality of life you have...if it's rubbish hope it will improve......wishing for the moon will most likely leave you disappointed....which in my book = stress & for me that = pain.

RichardG profile image
RichardG

From not being able to walk, dress myself or pick up a knife and fork I have been in remission for about 6 years now. Diagnosed in 2009 started on methotrexate which sort of worked but still had severe flare ups. then added plaquinal which was OK for about 2 years then had trouble focusing which improved a few days after stopping. Couldn't tolerate sulphazonisole. Eventually started Humiria and methotraxate and haven't looked back. DAS was down to remission levels in a few weeks and has stayed there. No pain or flare ups for over 6 years now and back to playing golf, football and DIY. Now slowly reducing Methotrexate dose and down to 7.5mg/week with no return of RA

andyswarbs profile image
andyswarbs

RA can disappear as miraculously as it appears in the first place. I believe RA is triggered by a problem with the gut such that what would normally end up being digested thoroughly is no longer and the remains, instead of being passed out of the bowels end up in the blood stream.

My point is many things might correct the gut problem. For some people it might be a paleo diet, for others it may be vinegar, for others it may be anti-biotics. For me it is a whole food plant based diet with minimal oils, which with hard exercise is giving me a full life back again.

Whatever works for an individual, works and that is all that matters for anyone this crippling disease.

On the other hand I cannot see how drugs per se will generate that gut correction, in fact most of them whilst minimising the symptoms actually exacerbate gut problems, meaning you need other drugs to correct for the side-effects. One side-effect of some drugs is simply drug dependency, for example I have reports that prednisone is harder than cocaine to kick! So the best that can be hoped for on drugs is peace of mind that the RA is under control, at least for now.

Beaches2 profile image
Beaches2

Like so many things with this condition, the answer is not at all clear cut.

I think according to the das scoring system I have been in remission for 2 years most of the time. But, it would depend when the test was done, I have mini flare ups every so often.....usually just one joint. If I was tested on one of those days I wouldn't be in remission according to Das. I used to do the das score myself every time I got blood test results.....the test is online.

When I was first diagnosed I assumed remission would mean it had gone away completely, perhaps never to return. I now accept that's not really how it is. Perhaps for a few the disease disappears but I think that's extremely rare.

I am on mtx, lefl and abatacept and we are very slowly reducing the lefl.

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