A doctor once told me that Wegener's can "...burn itself out." In other words, the patient can consider that they no longer suffer the condition.
Is this true? Is there a point when the condition has been dormant for so long that it can be considered cured?
Shanat, Some of the vasculitis diseases can "burn themselves out". I'm afraid the doctor who said that WG can follow that pattern was mistaken. WG can't be cured it can only be kept under control. Sometimes this control is because the patient takes maintenance therapy, and some lucky people can stop taking all meds and be fine. However, patients can be in remission for years and years but then it can raise it's head again. That is the reason why WG patients need continuous monitoring.
Sadly your doctor highlights why we all have a duty to help inform those who lack a proper understanding of vasculitis as well as educating ourselves. Just because they are qualified doctors doesn't mean they know more than you when it comes to this damned disease. Doctor certainly doesn't always know best so don't be afraid to ask questions, challenge and if necessary go elsewhere to get what you need and deserve!
At a Cambridge vasculitis support group meeting last year Dr David Jayne expressed the view that patients with chronic systemic vasculitis should never be completely discharged from the clinic and they should be monitored at least annually. I have to agree with the above comments made by Martin. We occasionally hear of patients with WG who are discharged from hospital after only months. Where vasculitis is not fully controlled, kidney damage can continue to take place with no clinical signs until it is far advanced. Even Henoch Schonlein Purpurea, which affects mainly children or very young adults and does seem to "burn itself out" after only months, with little or no treatment, can cause kidney damage years later. So think of it like a big fire, that does burn itself out, but there can be smouldering embers long after the flames have died down.
I suppose that my question is an evolution of your question concerning what is meant by remission.
My WG has been dormant for many years now, having reached the stage where the only medication I am taking is for blood pressure and cholesterol, with bloods only being monitored annually. Perhaps I was just hopeful, despite still suffering nasal problems and fatigue, that it would burn itself out.
Despite a relatively long period of quiet (with a minor flare), Dr Jayne has recommended I get my bloods checked every two months to ensure I have the best possible chance of spotting any signs of fresh activity.
I was told by some 2 local ENT Consultants that WG can burn itself out. When I queried this with my Rheumatologist she said that for some people maybe the illness becomes quiet but you should still be checked regularly.
Perhaps I have become a hypochondriac since being diagnosed with WG but after a significant flare last year I now insist on monthly blood tests to catch any changes as soon as practical. I am currently in medication maintained remission - trying to reduce the Pred slowly over time.
I would have thought that if Shanat has still got nasal problems and fatigue, the WG has not gone away, it's just hiding. Regular checks are still preferable to waiting for a relapse.
Thank you Shanat19 for your question. I was told exactly the same thing by a doctor about five years ago. However, I am thankfully, still monitored on a regular basis.
Is it usual to be on three types of immuno-suppressants at the same time
Help, a friend suffers from rare form of vasculitis (not sure of type sorry) and giving up hope!!!
Are any members with WG ANCA negative ?
