I was dianosed with WG back in 1996, it has been in remission twice but is active again.

[Kenneth]

has anyone been through the same statistics & does anyone go back further than myself.

[PatriciaAnn]

My WG was diagnosed in 2003 so you beat me by a good many years. I've relapsed once, about 4 years ago. A short sharp shock of cyclo and high dose pred got it under control. A change of maintenance drug to Azathioprine is keeping things under control - that and a 5mg maintenance dose of Prednisolone. I hope that you are getting appropriate treatment and that remission will soon be achieved again.

[Kenneth in reply to PatriciaAnn]

Patricia/Ann, I managed to get off prednisalone last October. My wife died in July this year.

Dr. Jane seems to think that the trauma has caused the WG to come out of remission again. I am back on the steroids & have been on a course of Rituximab. I am due my last dose in December.

[Essex-jill]

Hi Kenneth, I was diagnosed 13 years ago and have many relapses over the years. I usually only remain in remisssion for about a year or more. But I have been having Ritiximab over the last few years every 6 months and this has helped a great deal. Hope you are being offered more treatment and are soon back in remission.

Jill

[Kenneth]

Jill, yes I am recieving treatment again. Prednisalone & continuing my course of Rituximab, last dose in December. The Rituximab has been a great help to me but because of the trauma of losing my wife in July, all that work has now been undone.

[Dbis22]

I can beat you by a fair margin. I was diagnosed in 1991. Major probs to start with which almost affected organs I didn't know I had. Worst 'feature' was kidney failure but now kidneys are 100%. Still lots of joint pain and ear problems. Currently trying to address headaches caused by intracranial pressure. Have been on varying doses of Prednisolone and Azathioprine throughout. Just one major relapse (touch wood)! Eye problems in 2002 - scleritis I believe. I wouldn't say it was ordinary life but it is certainly better then it could have been !! Still sometimes have to remind myself that the glass is half full - can be hard sometimes ! On the plus side the various doctors I see in Oxford are superb. Still 'educating' my GP though ..... work in progress !!!

[PatriciaAnn]

Hi Kenneth I'm so sorry about your loss. I'm convinced that stress had a lot to do with the onset of my WG and was a contributory factor when I flared four years ago. I lost my father and my dog within a month of each other two years ago and I was worried that this might lead to another flare. Fortunately it didn't. However, I'm sure you are right in saying that stress has caused or contributed to your recent flare. Hope you are soon back on track.

[DevonLottie]

I'd agree. Stress is a definite trigger. I try to lead as calm a life as possible but of course, that's not always in our control. I do hope things settle for you Kenneth. My WG was diagnosed in 2002 and has very rarely been totally quiet - fighting hard to get rituximab (had one dose of two infusions but the Devon pct are not overly helpful in getting more ...) as I've heard fantastic reports about it.