I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: del on June 29, 2009, 06:32:36 PM

Title: Wagener's Disease
Post by: del on June 29, 2009, 06:32:36 PM

Anyone ever hear of wagener's disease?  A friend was just diagnosed with it. His first symptoms was what he thought was a sinus infection. He has been on dialysis for a couple of weeks. Think it may only be temporary(dialysis). He may have had his last treatment.  I googled it and found some info but was just wondering if anyone on here had heard of it.

Title: Re: Wagener's Disease
Post by: Restorer on June 29, 2009, 11:16:44 PM

Wegener's Granulomatosis? That was on the short list of what could have caused my kidney failure, but the cANCA tests came back negative (twice, almost two years apart). As I recall from my research, there is potential for the kidney problems to resolve to some degree with sufficient anti-autoimmune treatment.

Title: Re: Wagener's Disease
Post by: Lillupie on October 30, 2009, 01:45:32 PM

yes I have heard of this disease. THey thought i had this in CHildrens Hospital because they really  didnt want to admit that the drugs that they were giving me for lupus caused me to get sick. So yes i have heard of it. lol

Lisa

Title: Re: Wagener's Disease
Post by: Dodgedude2001 on August 17, 2010, 12:14:15 PM

I DO have that and I have Goodpastures.....Its super rare to get both, but I sure did! My Dr thought I had a sinus for 4 month! By the time he figured out that I didnt have a sinus infect I was almost a goner! Wagner's is strang disease, well so is goodpastures.......

Title: Re: Wagener's Disease
Post by: Sunny on August 17, 2010, 02:34:41 PM

I had Goodpasture's too. 1 in a million get it. It is an autoimmune disease. No fun at all.

Title: Re: Wagener's Disease
Post by: Dodgedude2001 on August 17, 2010, 03:21:10 PM

For sure.....I have both an both suck!!

Title: Re: Wagener's Disease
Post by: Allie_LP on October 26, 2011, 01:34:49 AM

I have Wegener's myself and had chronic sinus/ENT problems all my life before my diagnosis over 12 years ago. The symptoms can be different for everyone for example, it mostly affected my kidneys whereas a friend of mine who also has it had more lung problems than anything. My biggest qualms were with the treatments consisting predominantly of high doses of steroids and chemo which left me rather unsightly for awhile. Fortunately I've been in remission for over 5 years and you can lead a perfectly normal life at that point just keeping moderation in mind. The best thing that has happened to me with regard to Wegener's was being involved in a clinical study at the National Institutes of Health in D.C.. Your friend should definitely look into that; they provide incredible care, every test in the book and are willing to pay travel expenses if you qualify to be in the study.