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Wegener's Granulomatosis

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Old 07-22-2003, 11:28 AM   #1
Join Date: May 2003
Location: Almont, MI, USA
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ginn26 HB User
Lightbulb Wegener's Granulomatosis

has anyone heard of this "Wegener's Granulomatosis" I was just diagnosed with it and wanted to let FM sufferers now about. One of main symptoms is joint pain. Please have your doctor do a ANCA test done. Please let me know if you have heard of this or have it. Thanks!

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Old 07-24-2003, 07:18 PM   #2
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Join Date: Mar 2003
Posts: 209
MistyMisty HB User

It is an uncommon disease that usually begins as a localized granulomatous (cells that look grainy or look like they have little granules in them) It shows as an inflammation of the upper (nose) or lower respiratory tract, (the lungs.)
It could progress to the glomerulonephrons, meaning the (kidney filtering system.) There is no known cause for the condition but can resemble an infectious disease. Males get it 2 times more than women.
The test ANCA means: high titers of antineutrophilic cytoplasmic antibodies. They can use this test to follow the course of the disease as well. Patients with "limited disease" may have nasal and pulmonary lesions, with little or no systemic involvement. (where it does not affect the rest of the body.)
It is now being treated with immunosuppressive cytotoxic drugs. Many people have great improvement if diagnosed early and treatment started as soon as possible. There is now a high remission rate with the proper medical care. Some remissions are long term and complete. Predisone is one drug given for this disease. Does this help? I don't know of anyone who has it, but quick treatment is necessary. I got this information out of the Merck Manual, the same one doctors use to help make a diagnosis and use as a treatment reference.
I read it and put into my own words so I hope it makes sense to you. MistyMisty
[This message has been edited by MistyMisty (edited 07-24-2003).]

[This message has been edited by MistyMisty (edited 07-24-2003).]

Old 07-25-2003, 04:39 PM   #3
Join Date: May 2003
Location: Almont, MI, USA
Posts: 33
ginn26 HB User

Any info helps and have been doing alot research on this and have learned alot, probably more than then my RA doctor. Trying to call him to ask him more questions because my ANCA level is 1:512 and from what I have been reading that is very high, but i could be reading it wrong. He didn't seem that concerned. Thanks for your reply

Old 07-27-2003, 11:34 PM   #4
Join Date: Jun 2003
Location: WV
Posts: 230
AliceBlueBelle HB UserAliceBlueBelle HB UserAliceBlueBelle HB UserAliceBlueBelle HB User

What are some of the symptoms?

What was it that made your doc order the test he did?


Old 07-28-2003, 07:23 PM   #5
Join Date: May 2003
Location: Almont, MI, USA
Posts: 33
ginn26 HB User

I actually didnt know my doctor ordered the test, I know he was testing me for RA. There are so many symptoms, it can effect the lungs, kindneys and sinuses. It really can effecte any organ. I went to the doctor because my joints and muscles were hurting really bad. Go to yahoo and type in wegerner's granulomatosis. You will find alot of info. there.

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