wondering

[Pjj]

My name is Paula and I have an aunt that is a young 70 years old and was diagnosed with Wegener's about 4 weeks ago and oxygen at 4 liters and dialysis 3 days a week, still very sick, has had prednisone, Cytoxan, plasmapheresis, and lots more, I am a nurse of 23 years and had never heard of this.

[renidrag]

You will find a lot of information and nice people here to help you try to understand this illness. If you can, tell us your Aunt's story to diagnosis. The meds she is on are pretty usual and with the oxygen and dialysis I can only assume she has lung and kidney involvement. All is not lost, with continued protocols she should get better. Others will be along to say hello and bring support.
Dale

[Pete]

Hi Paula,

This seems to be a new disease for many medical professionals. Depending on which statistics you follow, the disease afflicts one in 5,000 - 30,000 people. It also presents in many, often vague, ways making diagnosis difficult and misdiagnosis more likely.

I was diagnosed at age 64 after being sick for a month. I spent a week in hospital before diagnosis. I never had significant kidney involvement, but did have sinus, lung, and ear involvement. My medical regimen was similar to you Mom's minus dialysis and plasmapheresis.

I'm 68 now and am able to lead a nearly normal life.

The best advice I can give for your Mom is to find a GPA/Wegs specialist she likes and trusts. Then, follow doc's orders and live life as best she can. Define life by what she can do rather than by what she cannot.

[vdub]

Its considered a rare disease and a lot of doctors haven't heard of it if they happened to be sleeping for 10 minutes when it was discussed in med school. At least, that's the impression I get after talking to a few docs about it.

Wegs seems to be either getting more prevalent or better diagnosed. I think it's getting better diagnosed, but, then again, its kind of like cars. If you have a Corvette, then you seem to see a lot of other Corvettes, whereas if you don't have one, you never see them. Kind of the same with the disease, if you have it, you tend to notice more of others who have it.

Wegs has sooooo many different ways it can attack. And, actually, no one is ever really diagnosed with wegs, its just that they ruled out everything else.

However, they are searching for specific markers like they have for RA and there is some indication that a Mt Sinai researcher (Siminovitch (https://secure.e2rm.com/registrant/tribute.aspx?eventid=109949&langpref=en-CA&Referrer=https%3a%2f%2fwww.google.com%2f)) may have found one. Her study of 500 Canadians suggested GPA had a link with two specific genes. The US has provided an additional 2000 DNA samples for additional testing. I'm sure some of my spit and blood, along with many others on the forum, are in those samples. I had a difficult time getting the blood samples they wanted because I didn't have a doctor's draw order, but I finally got it and then I spent 45 minutes or so spitting into test tubes before packaging everything up and FedEx'ing it to Mt Sinai.

[tigerleah23]

Hi Paula! My name is Leah and I was diagnosed when I was 23 because my kidneys failed. It took them a month to diagnose me and my kidneys could not be saved. So I too go to dialysis 3x a week. It has been almost 10 years I have been living with this rare disease. It is not curable, but it can be put into remission for long periods of time. I took cytoxin for 1 and 1/2 years with about 40 mg pf prednisone (varied with pain). All of my hair fell out, but there was light at the end of the tunnel! I was in remission for 8 years and I am just now having my first flare (a recurrence of the symptoms). The complications of the kidney failure make it so much more difficult to deal with. A doctor once described WG to me as "having an extremely over-active immune system". Basically, your white cells aren't fighting off other stuff and see your own organs/ soft tissues as enemies and attack them. The cytoxin slows down/suppresses your over-active white cells so they remember what their original programming in defending your body is. The prednisone prevents inflammation of the cells that are being attacked and lowers the pain level. It sounds like the medication is right for her advanced symptoms, like I had. With the right balance, she should be able to live a fairly normal life. Best of luck to you and her, support is SO important!

[gilders]

Define life by what she can do rather than by what she cannot.

Too true Pete. We could all do with living by that rule :thumbup: