Wegeners disease in Remission.

**gwenllian111** · 10-24-2010, 07:26 AM

Someone told me that those who have serious health conditions, are also the biggest risk takers when it comes to their health.

I guess i'm a bit like that, especially when it comes to taking pred.

After my initial diagnosis in 1995, I maintained remission for 18 months. Therafter, I developed tracheal stenosis - but apart from that, was feeling 'ok'. It was only after having my children, that my immune system really kicked back. No more children for me, after each pregnancy, I feel as if a little part of me fades and I need every ounce of strength i have now to give the children I have.

I know this sounds weird, but do quite a few people actually 'die' of WG? Is it quite rare for WG to actually kill patients nowadays?

**Jack** · 10-24-2010, 07:35 AM

Unfortunately Wegener's patients do still die of their illness, we have had three occurrences here on the Forum over the past couple of years. However, this is often due to poor treatment which is the main reason why we bang on about finding a specialist to oversee treatment. Sometimes, it is simply due to intolerance of the drugs used for treatment and there are still very few alternative options available.

Doug · 10-24-2010, 10:03 AM

About 8% of weggies die, something we each need to keep in mind on those days it's easier to ignore symptoms instead of seeing a doctor. Yep!

**elephant** · 10-24-2010, 11:43 AM

Like Jack stated most of those 8% who die were not medicated correctly or died of complications ( infections, organ failure/damage).

**Sangye** · 10-24-2010, 02:08 PM

And that doesn't count undiagnosed.... Wegs is a deadly disease if not treateed properly.

**elephant** · 10-25-2010, 12:23 AM

I was thinking about that the other day, how many others who have died from this WG and the death was passed off as something else.

**Sangye** · 10-25-2010, 01:07 AM

Yes, or only dx'ed on autopsy. The doc who dx'ed me said that happens a lot.

**JanW** · 10-25-2010, 01:09 AM

Two people on the forums have died just since I've been on here -- and I only joined in January.

**jola57** · 10-26-2010, 07:12 PM

These unhappy events bring home the reality of this disease. We can all die sooner rather than later, so make every day count and don't sweat the small stuff.