Frequency of wegs flares/relapses

[Pete]

Does anyone have any info about how frequently wegs patients experience flares or relapses? This is a point of curiousity for me. Has any research been done on this question, and if you are aware of any, would you please let me know?

Thanks,

Pete
dx 1/11

[Dirty Don]

I don't know that there is a frequency stat for WG flares recurring...just listening on here, there's a wide variety of minor relapses and times. As for chances of relapse, there will be forever a 50-50 chance of relapse according to studies and my doc. That does not mean it will happen, but there's that statistic.

[Sangye]

I seem to recall Dr Seo telling me that 50% will flare in the first 5 years, though it may have been less than 5 years. Nearly all will flare at some point. Flares aren't necessarily severe and are easier to control the earlier you catch them.

[drz]

I got the impression that flares are very common shortly after initial diagnosis, but the longer you stay in a remission, the chances seem to decrease somewhat until you make some change in treatment. When you start tapering your meds, I think chances of flare increase unfortunately. If the flares are caught early and treated right away, they are less likely to result in the severe damage, like many had during their initial presentation, if you were diagnosed fairly late cause the doctors had no clue what diasease you had.

[Pete]

Thanks, folks. I thought randomly spaced flares
might be the case. I've been off cytoxan for a month now and on methotrexate for three weeks. So far, so good. Hope to play golf in the morning.

Be well
Pete

[Dirty Don]

Hope to play golf in the morning.

Glad you're able to play...I find golf the great equalizer: I'll never be as good as I'd like, but it needs so much focus that I forget where I am and just play...swing well!

Don

[KathyB]

I last played golf in spring, 2011. After only getting through 9 holes and going into the clubhouse exhausted, I realized after dx this was the first of the chronic fatigue symptoms I felt. I'm looking forward to playing again this fall when the rates and temperatures are lower and my husband and I can take our time!

KB

[Dirty Don]

Yea, another golfer! People think we're crazy chasing little white balls, I find it soothing and distracting...hehe! Anyway, as per your fatigue, yes - this is also what made me realize I have to be in better shape/condition. So, I'm trying, not terribly successful yet, darned pred seems to like making me fatter - but that's just an excuse. As the heat diminishes here, and the monsoons, I, too, will take the opportunities to walk and work out more...it's a drag with the fatigue, but it's worth it. Swing well!

Don

[Pete]

My get up and go has got up and went today. Not feeling particularly energetic today, but don't feel bad. May go out and putter in the yard after while. Best part is nothing hurts!!

Shot my lifetime low for 9 yesterday, but the heat and fatigue caught up with me on the second nine. Was hoping to break 100, but didn't quite get it done. Maybe next time.

[greenjanet]

i live around the corner from the best golf club in the world royal melbourne golf club in australia i dont play