What is the definition, you understand of the term often used by doctors when they say "your vasculitis is in remission".

[John_Mills]

This subject has been brought up many times.......some people understand that the disease is in remission because there is no evidence of disease activity but they are still on medication for vasculitis to keep everything stable where as others don't think they are in full remission until they are not taking any medication at all for their vasculitis.

[PatriciaAnn]

I consider myself to be in remission because I feel OK, my bloods are OK, and my medication is working. So "remission" to me means that all is quiet even though it is only quiet because it's drug induced.

Now "full" remission, that to my mind is an entirely different thing. That would be no drugs, no activity and feeling on top of the world. All I can say is "roll on" but I don't hold my breath.

[Hidden]

Great question! I'm of the opinion that with any disease which cannot be eradicated or cured then there is no such thing as remission. I too like the 'quiet' and 'active' terms to reflect what's going on. Unfortunately, as we're all to aware there are varying degrees of activity and blood markers can mask the truth so tend to feel a more accurate description is 'under control' but appreciate it can have a psychological benefit to be told you're 'in remission'.

[Hidden]

I often wondered what remission meant too. My doctors say I am fairly stable and that my disease appears to be quiescent. Remission to me means drug free but I feel enough well even though blood results can be all over the place.

[vivdunstan Volunteer]

Remission to me means drug free as well. As far as I'm concerned while I'm still on the drugs I'm not in remission, just controlling things, no matter how stable symptoms might appear. I was in a quasi remission between 2000 and 2004, but still on high Azathioprine and low steroids. But things then relapsed hugely. And even if you go drug-free things can come back with a vengeance.

[Jann]

Pat'sse of the definition is closer to my understanding. The Doctors at the clinic I attend used the term when my ANAC went below 5 and I was feeling OK even through I was still on IV treatment. The no drugs is just a step one gets to when in remission when the condition has been stable for a few years.

[Essex-jill]

For me remission is when I have less joint pain, nosebleeds and a little more energy. It is also when my bloods especially ESR and CRP levels remain in the lower reference range ( I have always been ANCA negative since diagnosed 13 years ago )

[pwc51]

I rely on my Rheumatologist to make the call! He says I am in remission - albeit medication maintained. It seems to be when the blood readings are 'normal'. He does check that i am feeling OK too - largely confirming the blood readings.

[Ezrela]

My local Rhumatologist gave me steroid injections, then gave me a bunch of needles to take to my GP to keep for further injections, 6 weeks later I went back for a review and she looked at me and said that I was now well and it is a good thing to get me back to work as soon as possible, point was, I still felt ill, and couldnt walk far, got out of breath, had joint pains, she discharged me, told my GP to keep me checked, that was 3 years ago, I have never had any meds since, one of the other doctors told me quietly it was all about money and thats why I was discharged, I have never been in full remission and it is still nagging around in the background, but luckily I managed to get a referral to London. I think remission should mean feeling totally well and being checked regularly and monitored,

[John_Mills Volunteer in reply to Ezrela]

That's a shocking story. Are you now under care in London or is that yet to happen? There are those very high up in the vasculitis world who reckon that if you have ANCA associated vasculitis (AAV) you should never be fully discharged. AAV is not curable and can return at any time.