Please respond.. Wegener's Granulomatosis, is it incurable?

It is incurable, but more importantly, it is treatable - and that treatment needs to begin immediately to drive it into remission. The initial treatment will likely involve a form of chemotherapy involving drugs like Cytoxan and steroids. With treatment and periodic monitoring, Wegener's patients can live lives just as long and enriching as anyone else.

Thank you very much..

I have Wegener's. It is incurable but is also treatable. Many people who have it live just as full a life as anyone else. I was diagnosed 6 years ago and am doing fine. I am completely off my medications. I am not cured because it is possible to have a flareup but I am in remission. Much depends on if he was diagnosed before there was major damage done to his body. I have what they call Limited Wegener's because I was diagnosed before it damaged my major organs. If you would like to contact me directly for additional 

 ***this post is edited by moderator *** *** private e-mails not allowed***Please read our Terms of Use

I am curious how they determined it was Wegener's. I was diag. in 2010 but I believe I have had it since 2007. 20% of patients test neg on the p-anca or c-anca. Mine was diag through a biopsy of my sinuses. It was determined I had granulomas. The disease has destroyed my sinuses, I have no sense of taste or smell and my septum has a large hole in it. The biggest worry a wg patient has to worry about is it going to your kidneys. I have zero signs of kidney damage. I take Rituxan infusions. I will be doing my second one this month. I think with the advancements in medicine your brother will be okay.

Oh.. that's nice.. Guess you were lucky in a way..
From my understanding (noone tells me anything), he received some damage in atleast his lungs and propably his kidneys.. He coughed blood a week or so before he was diagnosed.. And he peed blood once on my visits to the hospital.. I hope it won't be anything too serious..

lainey116 wrote:

Xenios wrote:

Hi, my brother was diagnosed with Wegener's..The biopsy results came in a few hours ago.I skipped through the text in wiki, and it said nowhere whether you can live a long-life..Only that mortality is 87% in 5 years time and that it is incurable; yet the doctors seem more positive than they should be.

Can anyone clarify me this disease a bit more..?

(I don't have the money to buy a real medical book, and after I found 2-3 good ones, all of them where from 350 to 400euro (aboutUS$450) )

I am curious how they determined it was Wegener's. I was diag. in 2010 but I believe I have had it since 2007. 20% of patients test neg on the p-anca or c-anca. Mine was diag through a biopsy of my sinuses. It was determined I had granulomas. The disease has destroyed my sinuses, I have no sense of taste or smell and my septum has a large hole in it. The biggest worry a wg patient has to worry about is it going to your kidneys. I have zero signs of kidney damage. I take Rituxan infusions. I will be doing my second one this month. I think with the advancements in medicine your brother will be okay.

They did a biopsy.. not sure at which part though.. He was positive on all tests.. And I hope so too..!

When you look at the medical journals keep in mind that there is no source that monitors and publishes all of the outcomes of WG.   Doctors publish when they have discovered something significant about the condition itself or the treatment, but nobody collects and follows all of the WG patients from diagnosis and logs them into journal for their lifetime.  That fact makes a "mortality rate" pretty intimidating and that expression is most likely an abused statistic.  I have not seen the source, but that percentage is most likely a rate from a collected sample (not the whole populus with WG) or is a statistic that is saying something just a little different that the way it is expressed.  That rate did not mean that they took all people in America with wegeners, compared them with all people who died from wegeners that year and computed a statistic.  There is not a database that follows cases from diagnosis to the possible outcomes such as long term remission.  Don't let someone tell you there is an incurable mortality rate with this condition.

I had this condition about 30 years ago, my case was published twice in the Journal of American Medicine, once when it was diagnosed in early adolescence and another when cytoxan alone was found not to prevent cerebritis.  However, I have been in remission for almost 30 years, without medication, and my case has not been published simply to document this long term remission.  Since patients are not part of any documentation after their treatment, those stats you see will look intimidating, especially when it is combined with the behavior of others who want to feel important and use the word "incurable." 

 

Yes hun, there is no cure for Wegeners. It is treatable if caught early enough. It totally shut my sons kidneys down. He made it 6 yrs and died 11 months ago

sherry, love, you do illustrate one point that happens to me years later. It's one heck of alot easier to believe that my post is probably from some attention seeking adolescent trying to save the world and this remark won't change your view. I run into a problem where I cannot disclose my medical history outside of my network of doctors all from people who are convinced that wegeners couldn't have happened to me, espeically so early. I have been thrown out of a university for people who thought I was trying to cover the "real cause" of some problems they imagined. I can argue epilepsy caused by those same leisions that were on my skin and in my muslce or I can show them the scar in my chest from the couple of lung biopsies I had when my x-rays were almost solid white but that isn't enough proof in its own rite. I was told I was stabbed in the street before dealing drugs. I could also argue a newer idea behind the idea of cure, immunosuppresion until ANCA is no longer produced. That's not going to do any good. If you want to believe it's incurable go right ahead but don't wreck the chance for someone whos condition is active with such a negative belief.