Wegeners disease in Remission.

[elephant]

My question is if 50% of people who have Wegeners disease stay in remission without medicine...does that mean that they have no nutritional deficiencies? less stress? Or that the wegeners disease was caught early so less damage?

[Sangye]

Good question. I look at some of you who had major lung and kidney involvement and were back to work in 3 months and wonder what the heck went wrong with me. And others with less severe disease than me who died. There's no way to figure it out. It just is what it is. I think the best thing we can do is find ways to get stronger physically and work towards acceptance of our situation.

[elephant]

Wegeners is a mystery to me. I love to figure it out but I know that is impossible. I love trying to figure things out even though it is what it is.

[Sangye]

I'm the same way!

[jola57]

elephant it keeps the mind busy

[Col 23]

Do they define remission when you actually get of the medication and stay off for a period of time. Does anyone know the longest period of remission without any flares.
From what Ive read it usually comes back in some form after 1 -2 years after treatment. I also wonder if the younger you are the longer period of remission if caught early or if the older you are the less chance of long periods of remission. Hope that makes sense. Any thoughts.
Col 23

[elaine krepis]

Hi Elephant, my name is Elaine and my husband has just been diagnosed with Wegeners.People are mentioning dying ,this is a little disturbing can you tell me what are the situations that you know of death with Wegeners. So far my husband has got it in his nasal passage, he has had his lunges checked and they are ok. He has no side effects with the medication so far. Can you just give us a little info of what we could be in for.

[elephant]

Hi Elaine, Welcome! First thing that is important is that he see's a Rhuematologist who specializes in Wegeners Disease. Having a specialist early on will save his life because they are up to date on the research ( wegeners disease) and see 100's of wegeners patients.
Usually the one's who die probably didn't get the right treatment , misdiagnosed or was too late because of all the damage that wegeners caused.
Does your husband have kidney involvement? What medicines is he on to control the Wegeners disease?
You will get alot of support here Elaine, glad to have you here.

[Sangye]

Hi Elaine, welcome to the group! I don't have anything more to add to what Elephant said-- I agree with her 100%. Just wanted to cast that vote.

[JanW]

Hi, Elaine -- the most important thinng in WG is viligance, constant maintenance of your health and losing the denial! This disease in unpredictable so you want to make sure that your rheumy is monitoring your bloods and urine (also a check for kidney involvement) frequently. Many people will WG live long and relatively healthy lives, but remember that it can attack almost anywhere at any time. One thing that is helpful in the early days is to get a baseline of all your 'systems' so, an EKG, hearing test, eye exam (by an MD, preferably one that sees autoimmune cases), bone density scan, lung CT, examination of throat and sinuses when they are involved are all in order. That way, if you develop hearing loss or congestion the doc can see where you were when newly diagnosed, and where you are now.