Just curious if you were told this?

[im so blessed]

I've been reading some old post and i see i am not the only patient told that my wegeners will probably not come back. It was 14 years ago and i was only 16. They told me since i was so young and i responded so well to my initial treatment, i'd probably have a very normal life without symptoms. Didnt happen for me. I've had at least 10 flares since...almost every year. But i still have much to be thankful for. What were you all told? My dr was awesome! And she always liked to remind me that she did not hold a crystal ball. I wonder if this idea was a statistic that has since changed :(

[drz]

I've been reading some old post and i see i am not the only patient told that my wegeners will probably not come back. It was 14 years ago and i was only 16. They told me since i was so young and i responded so well to my initial treatment, i'd probably have a very normal life without symptoms. Didnt happen for me. I've had at least 10 flares since...almost every year. But i still have much to be thankful for. What were you all told? My dr was awesome! And she always liked to remind me that she did not hold a crystal ball. I wonder if this idea was a statistic that has since changed :(

The experts generally say that young patients tend to recover faster and often have a longer remission but you must have been an exception.

[whatthewhat]

The experts generally say that young patients tend to recover faster and often have a longer remission but you must have been an exception.
That's what we were told too, but I guess our daughter was an exception also. :blink: I know a lot of pediatric "exceptions"... Fun fact: rheumys used to think Juvenile Rheumatoid Arthritis was often outgrown...now they don't. Hmmmmmm.

[gilders]

I was fairly young (17) when diagnosed 20 years ago. I have had quite a few relapses, but fortunately, my remission periods have gotten longer the older I get. At 17 I was very close to death. I only managed a short dose of Cyclo as I quickly became intolerant of it. I did respond well to pred and azathioprine. But as I relapsed soon after I would have to disagree with the idea that younger and possibly fitter patients are less likely to relapse (recover and respond to treatment better, perhaps. But no lesser risk of relapse).

[me2]

I was 19 at the time I was diagnosed and got treatment. I too was told that it was unlikely to come back. It did. I can view it with a kind eye though- the treatment protocol had only been around for about 5 years. They had very little track record to make predictions. We patients always want predictions- so we get them.

The range of options for treatment is so large right now that I would guess predictions are even harder. The old nuclear attack with Cytoxan is not even done anymore. I think long remissions were more likely back then- but then so were horrible side effects from Cytoxan.

[Wiegson]

I'm the odd ball since I was diagnosed during pregnancy. My doctor is hopeful that I'm going to go into remission. My labs have all improved greatly and I'm being weaned off of pred and my imuran is holding steady. Here's to being hopeful!!


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[Mas78]

I was diagnosed when I was 22, I remember being told if I went into remission I would have a good chance of a flare at some point. luckily I've never had one yet. past 6 months I've had a few other things going on but after meeting with my Rhumy again this past week he still thinks I'm ok.

[Randy]

I was 57 when diagnosed and have been in remission for 5 years. It may be different for older people but I was told it always comes back. It may take 25 years but at some point it will reappear.