WEGENERS / GPA

Hi guys,

Just a quick query really... I'm only 27 and relatively healthy (not overweight, regularly exercise etc...) I've been diagnosed with GPA for three months now and seem to have reacted quite well to the treatment I've been given so far.. (rituximab and daily steroids 25mg/od).

I've been wondering if as I get older (I'm talking like in my 40's) if I can expect to find it harder to 'get over' flair ups of the disease or if its totally random from each patient... I'm hoping if I can maintain a healthy lifestyle over the coming years this will help me in later years! The only reason I ask is because I met a very nice 50 something man when in hospital that also has GPA. I've been in contact with him by email and it seems that he's really be struggling with the treatment of his most recent flair up (sickness and lots of other side-effects).

Are there any known cases of patients going into remission and never again having a flair up of the disease? (if yes I'm hoping I could be one of these lucky few!)

Kind Regards and a happy new year to all readers!

12 Replies

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  • Hello there, I'm sure it will depend on each individual. I can only tell you about my husband. It took a year to diagnose him and then he only had high doses of steroids. He then had infusions of Cyclophosphamide, followed by 3 different maintenance drugs which did not hold his GPA at bay so he's now on Rituximab which is sending him into remission. His GPA is largely in his head, eyes, nose, ears although now, the high dose steroids have produced Avascular Necrosis so he needs a new hip. He's 59 now, so older than you of course, although he was always slim & fit.

    I can only think that you have been lucky that you have been diagnosed quickly and are on good medications with a relatively low dose of steroids. You may need to manage your weight as this and chronic fatigue can be debilitating.

    Keep fit, I'm sure it's a key factor.

    Good luck with it and best wishes

  • Having a healthy lifestyle, eating well and having a positive outlook will help I'm sure.

    I was diagnosed about 3 years ago and initially responded well, came off the steroids quickly but have recently started taking them again as my disease is active.

    My rheumy had suggested that I might be a lucky one to only ever have one episode, and I know of one person who only ever had one episode with no relapses so far.

    I sincerely hope you stay well.

    Ally

  • Hi

    I was diagnosed with MPA in 2012. I went into remission with the usual combination of pred and cyclophosphamide and so far, touch wood I have not had a flare. I am now aged sixty and live a fairly normal life for a sixty year old. I get bouts of fatigue and have days when I feel yuk for no apparent reason but I am generally able to get on with life.

    There are so many variables with Vasculitis and you never know for sure what's round the corner. However there are people with Vasculitis who are lucky and have good continuity with remission. The fact that you are fit and healthy and in remission is a good start. As AllyG says, keep a positive outlook. Chris

  • My Dr. can not predict that remission will be guarentied or may be it will come back

    I have been on meds for 6 months now, and iit might 6 months more'

  • Being fit and healthy to start with is a definite help and if you can keep that attitude and get as fit and healthy as possible in between the bad bits, that'll be good. I've had to do a lot of climbing back to any form of activity in between more active bouts of illness and, though hard, it's definitely worth it as it means more good days than I'd have if I just gave in. And you'll feel a lot better just by achieving things. I have a hospital tradition: when I'm well enough to walk down to the wrvs shop, I buy a lion bar to celebrate. I also do this when there for outpatients. My target for this week is to get walking properly again so I can walk out to the hospital for my next appointment. Starting with attempting to walk down town in the next half hour!

  • For your encouragement, I achieved that goal. What's more, I walked it in 20 minutes, which is the normal time for a fit, healthy person like my husband (and the old, normal me). And back! Saved £12 in taxi fares so bought a treat from the baker's!

  • As you may have read in my other reply to one of your posts, I've had GPA for 9 years and in remission for over 7, with no apparent major flare (I'm now 58). My only issues are with damage ENT, respiratory and heart which either occurred whilst the disease was active or have been caused as a result there after.

    Obviously, no one can predict what will happen but it is possible to live for many years and remain flare free with a minimum of drug maintenance, although little is known of the long term effects of Rituximab.

  • Dementia being one of the rare side effects!

  • It may well be true as some forms of AAV can attack the brain but to my knowledge there's no peer reviewed evidence to support this.

  • Yes! It's totally random but know someone who has fully recovered!

  • What do you mean by fully recovered? There has never been a documented case of ANCA associated vasculitis 'disappearing' (i.e. the antibodies).

  • Brother, you are not alone!

    I'm 21, not overweight, don't drink much, exercise, got diagnosed in June this year. I keep wondering whether it's gonna trip me up in the future

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