Vasculitis UK


can anyone please tell me what it means to be in remission.

i have wg when i took ill my egfr was 14,i had 12 courses of cyclophosphamide and my egfr improved to 62,however it started dropping again to 52 and i waas told i had refractory vasculitis.

i was then given rituxumab and my egfr has stabilised over the last 2 months to 52.

does this mean i am in remission

5 Replies

Hi, on a DLA form my consultant wrote that I was in remission. When I saw her next she explained that I was in remission from the 'active' phase of the condition. I have found that I still have alot of problems that the 'active' phase has left me with that are very painful. I have CSV and fibromyalgia and have painful joionts and muscles, excessive tiredness etc, the list goes on.. I hope this has been of some help, try looking it up online.

Aud :o)


I think that the only one that can say you are in remission is your consultant. It is quite difficult to pinpoint and can depend on lots of different factors and results. The main thing is that you seem to have responded to your treatment so don't worry too much about putting a label on it. I have been classed as in remission from WG for 3 years but have still had flare ups in that time. Everybody is different and each consultant will have their own opinions on remission. Best wishes for continued good health.


There are two definitions of remission.... drug induced remission and remission with no drugs at all. I am told it also depends how long your WG activity has been stable.

John's is always around 29 and has been like this for a long while but it has been as high as 90. I think it varies from person to person. John is not drug free but sees himself in drug induced remission and has been like this for about 5 years now.

John has problems with painful joints and muscles, tiredness and painful feet. But this can vary from day to day.

John knows much more about refractory remission than I do but he is at a meeting tonight but I will ask him when he returns home. Susan


When I suggested to my comsultant that I was in a drug induced remission she informed me that It was due to an inactive phase of my condition, I prefer to see my condition as the former because I came off all my meds at christmas and I could barely move.


One definition states 'the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity'. Personally I prefer not to use the term but do agree with Susan's take on things. During a consultation with the eminent David Jayne at Addenbrookes he expressed that he didn't like the term and suggested the disease is either simply quiet or active. However, a proportion of patients show no clinical signs despite being ANCA positive and vice versa so perhaps we need to define exactly what we're describing before using the term? Perhaps what really matters is how we feel rather than whether the disease activity is 'labelling' us in some way?


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