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

[elephant]

I think some people require to be on medication to keep them in remission. I find it fascinating the one's who go in remission without medication.

[JanW]

It's all a mystery. My ENT, Dr. Lebovics, who is a recognized expert, cautions me that I don't know what's going to happen over the rest of my life (I turn 45 on Thursday) even though everything looks really good for me right now. My inflammatory load (primarily SED rate and CRP) are going way down (though still above normal) and, as of yet, I have not been on pred -- this is on 15 mg of mtx only. Dr. L. expected to be discussing my second SS surgery by now (average time between 1st and 2nd surgery is 3-4 months in his practice; I had mine in early March) and I could tell that he was surprised to examine me and find me 'fully open." At the same time, my rheumy wants to speak with him to get him to override his rule about "no saddle nose surgery until you are medication free for six months" because my rheumy says "you honestly may never achieve medication-free remission." Good thing my rheumy and ENT are in my age group because we are going to be together for a long time.

One thing that I have been and continue to be impressed about in terms of this really expert guys is how seriously they take, and want you to take, any bodily symptoms. Every visit ends with "if you feel ANYTHING out of the ordinary, you're to pick up the phone and call the office immediately." Next appointments are always scheduled before they let you walk out. They never rush, and they always emphasize that it can attack anywhere, at any time, and that there is really nothing as docs that they can do about this. They are very humble in the face of this disease because they have seen a lot of it.


If this is what active disease will look like for me (again, no guarantees) it's really not so bad, especially if I can get my nose fixed.

[Sangye]

Many people require drugs to maintain remission, needing an immunosuppresant and/or pred. I haven't found any statistics on the number of people in drug-maintained remssion versus drug-free remission, and how long each lasts. Wouldn't that be interesting to know?

In this group, Mike Caven seems to have the record for the longest drug-free remission-- 27 years! He also felt great all that time, like he'd never had Wegs. When he flared last year, I think he did ctx and pred again and went right back into remission.

I think Jack may have the record for the longest drug-maintained remission--25 years. It took him 5 years to get to remission.

Both of these guys give me a LOT of hope on a daily basis.

[gmyi]

Many people require drugs to maintain remission, needing an immunosuppresant and/or pred. I haven't found any statistics on the number of people in drug-maintained remssion versus drug-free remission, and how long each lasts. Wouldn't that be interesting to know?

In this group, Mike Caven seems to have the record for the longest drug-free remission-- 27 years! He also felt great all that time, like he'd never had Wegs. When he flared last year, I think he did ctx and pred again and went right back into remission.

I think Jack may have the record for the longest drug-maintained remission--25 years. It took him 5 years to get to remission.

Both of these guys give me a LOT of hope on a daily basis.

I am in remission since September 2007 without medication when I start with W.G. it was with lung and severe kidney malfunction, DVT and over blood coagulation
About august 2007 the doc put me off prednisone and in September I asked to put me of Immuring the doc was no cooperative with my apply but I ask him to make a brake with it for a month and see if there will, be any change in my blood test or filling
And from then I am with no Immuring and no Pre..
I thing that that because the veracity of the symptoms and different medication response from every patient it is no any answer for your question

I am in remission since September 2007 without medication when I start with W.G. it was with lung and severe kidney malfunction, DVT and over blood coagulation
About august 2007 the doc put me off prednisone and in September I asked to put me of Immuring the doc was no cooperative with my apply but I ask him to make a brake with it for a month and see if there will, be any change in my blood test or filling
And from then I am with no Immuring and no Pre..
I thing that that because the veracity of the symptoms and different medication response from every patient it is no any answer for your question