Ok so I have Anti Gbm vasculitus (posted a few times) and I've had just over 2 n bit years of treatment. I finally come off my Azothiprine in the next 2 weeks. Yay! Does this mean ik in remission? My consultant app was over the phone this month and didnt have much time to talk. I stupidly didnt ask him the two important questions: 1: being does this mean I'm in remission? And 2: how long will it take for my immune system to start up again ?
If anyone has any answers I'd be so grateful x
Never heard of Anti Gbm Vasculitis but if it's anything like most of the Vasculitides, then you may be in remission but that doesn't mean it's gone away and I would have thought you should be really careful and contact your consultant again.
It's a rare form of vasculitus, it effects 1 in a million. I'm sheilding at the mo hence having consultant phone call etc but yea hes going to call me in two months, once I've stopped Az to go over bloods etc. I will have bloods monthly and will check with my renal nurse inbewteen that time frame. But thank you for answering x
All remission means in any disease is that you are symptom-free - it can be drug-induced or it may be full remission where the disease process is inactive for the time being. There are no autoimmune illnesses I know of where it can be said with certainty that the patient is cured - once the immune system has been "deranged" it holds on to the potential to go haywire again at some later point. And
As for your immune system starting up again - I think it is most likely a "how long is a piece of string" question. It is always the same with rare diseases - there are so few cases to look at and this disease seems to have numbers of "atypical cases", that each case must be looked at on its own.
One of the medical articles I found says "Relapse is rare in anti-GBM disease, occurring in <3% of patients in the Hammersmith series (18). It is usually associated with ongoing exposure to pulmonary irritants such as cigarette smoke and hydrocarbons (76,77), and avoidance of these precipitants is an essential part of long-term management of these cases." It also seems to depend a lot on how you were by the time treatment could be started - how much renal and lung damage had already occurred.
So - relapse is rare but rare doesn't mean it doesn't happen. Like all autoimmune disease you hope for the best and keep a close eye out to make sure you do well.
All the best.
Thank you for your response. So It only effected my kidneys but I was down to 9% and amazingly I've managed get back up to 54% when they thought 25% would be my max. I guess it will always be a wait and see kind of thing. I dont smoke and never have so that isnt an issue. Thank you 
That is really impressive - because at 9% you were skating a bit near to dialysis or kidney transplant weren't you! All the best
Yeah, I believe you are in remission if you haven’t had a detectable anti-GBM autoantibody over the ‘normal’ threshold for about a year (timing may differ slightly I’ll need to check a paper). It’s how they assess when a person can have a kidney transplant as well.
In terms of your immunosuppression I think it can take anywhere up to 6 months? I’m not totally sure. It can depend on loads of other things such as when you last had cyclophosphamide, abx use, other medications, diet etc etc.
I hope this helps!
(I have anti-GBM disease)
Whenever I see my consultant team, they send a letter with my current results and status to my GP and cc me a copy.
Joint and muscle pain after remission. 
WG remission experiences?
Fatigue even if in remission?
A question about remission.
What does remission mean to you?
