FAQ - Wegener Granulomatosis
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What is the life expectancy of somebody with Wegener's Granulomatosis?

I may have it. I'm a 21 y/o female with no other physical health problems.

My sister in law got it when she was in her mid 20s shes 53 and doing fine, good luck hope you feel good  (+ info)

What are the chances of someone surviving Wegener's Granulomatosis if it is caught late?

The inflammation makes it hard for blood to flow. The disease mainly affects the blood vessels in the nose, sinuses, ears, lungs, and kidneys, although other areas may be involved. Without treatment, patients can die within a few months. With treatment, the outlook for most patients is good. Studies have shown that most patients who receive corticosteroids and cyclophosphamide get much better. However, the disease may return in about half of all patients. In these cases, the disease usually comes back within 2 years of stopping treatment. Treatment is directed toward stopping the inflammation process by suppressing the immune system.
I quote here, part of a report from medicine.net that states :-
“Methotrexate has recently been introduced as a drug for Cytoxan treatment failures. Moreover, it now appears that Cytoxan will not be necessary in order to maintain long-term remission and that doctors can convert to the less toxic methotrexate for maintenance. The reports also demonstrate that methotrexate can eventually be tapered off entirely after two years. Azathioprine (Imuran) has also been used as a maintenance medication after Cytoxan. Recently, intravenous immunoglobulin therapy (IVIG) has been shown to be helpful in treating relapses of Wegener's granulomatosis. Also, preliminary studies suggest that rituximab (Rituxan) may be helpful to maintain remission once the initial inflammatory disease has been controlled using medications mentioned above. These new regimens are welcome news for patients with Wegener's granulomatosis as medical researchers are searching for better treatments.”
It does not appear to be of consequence as to the stage at which the disease is diagnosed so much as the fact that it is diagnosed. However, accurate diagnosis may sometimes be a problem.
In all cases when detailed medical information is required, you would be advised to consult your doctor.
I add a link with details of this subject


Hope this helps
matador 89  (+ info)

How is Wegener's Granulomatosis spread/contracted?

Is this a deadly disease? A family member of mine was just diagnosed with this and I am concerned...

It cannot be spread,
It is fatal if not treated. usually treatment involves heavy dose steroids and Cytoxin (Chemo therapy) treatment for a year and then they will eliminate the cytoxin when things settle down, and taper off the steroids. I have wegener's and was diagnosed in 2004, and just went through a kidney transplant. The incidence of Wegener's is fairly common for a rare disease in our area (great lakes area) and if you were a nephrologist you may see two cases a year. If you were a Nephrologist in Phoenix, you may see it once in a career. No one has studied why it is so prevalent in our area. No one has pinned down any factor as to why it happens or root causes for the disease, that is the problem, with a rare disease, there is hardly any research done on it.... Look up Wegener's disease on the Cleveland Clinic's web site, they have good information, also John Hopkins as well.  (+ info)

I am looking for someone in Wisconsin who has Wegener's Granulomatosis. Let me know if this is you. Thank you?

I have wegeners granulomatosis. I am looking for anyone in Wisconsin that has this disease because it is really hard to go through it alone. I would love to meet someone in Wisconsin that has it. However the other side of me hope there is no one else in Wisconsin with it /: Thank you!

  (+ info)

Auto Immune Disease Wegener's Granulomatosis, are you one of the "lucky" 1 in 50,000 afflicted?

I'm trying to find out more information about this disease. My 73 year old mother was just diagnosed with it. I've researched all the medical stuff but I'm interested in truthful answers on the quality of your life after diagnosis and treatment.

Wegner's has been associated with Alpha-1 Antitrypsin deficiency. You might ask them about that. I had a friend that has Alpha-1 and Wegener's and he is now in remission with his Wegener's and doing very well. If you live near the Jewish Hospital in Denver they are excellent for these kinds of things. Dr. Sandhaus there is very experienced.
Take Care,  (+ info)

What's Wegener's granulomatosis?

anyone know what this disease does and how it can be cured?
Can the person die?
Dr. said there's a possibility of being on dyalisys every other day for the rest of his life.

Wegener's granulomatosis is a form of vasculitis that affects the lungs, kidneys and other organs. Due to its end-organ damage, it can be a serious disease that requires long-term immune suppression

Immune suppression can be achieved with heavy doses of steriods (e.i. Prednisone)

This disease has three distinct stages.

* The first stage often involves the sinuses and the onset of allergies not previously had or the worsening of pre-existing allergies.
* The second stage involves the onset of acute asthma. Normally, the person would not have had asthma previously.
* The third and final stage involves the various organ systems. Stage three is by far the most life threatening and painful. Often the person will develop severe nerve pain in their legs, arms and hands. Purple marks will appear on the skin and often sores will appear in the mouth or nose. The disease will affect the heart and lungs or it will affect the kidneys and liver.

People can live for many years in the first two stages before progressing to stage three.

disease is chronic and life long

hope this helps u  (+ info)

Wegener's Granulomatosis and sterility?

Here is the deal, I cheated yes look down on me and critize me it's fine i understand i'm scum and don't deserve any help...but the situation is my boyfriend and i were having problems i met a guy who i thought was great and wonderful and we talked and got close and he told me about this disease he was diagnosed with like 4 years ago but it was uncureable...also he said due to the treatment and disease he was unable to have kids, we ended up having sex a couple times, once the condom broke than 3 other times we didn't use one, i was not worried because he could not have children, while now i'm 8 months pregnant and wondering if HE COULD be the father...any advice or info would help...YA YA I KNOW I'M WRONG AND A BAD GIRLFRIEND AND DON'T DESERVE ANYONE...

Of course there's that possibility. I hope you have the decency to tell your boyfriend that he may not be the father of the child.  (+ info)

where can i find a best doctor for wageners granulomatosis in UK, Australia or USA?

Can some one help me out to find a doctor or hospital or someone who can advice me for wageners granulomatosis any where in world?

Try Dr. Ron Falk at the University of North Carolina at Chapel Hill. I work for a Nephrologist and we refer a lot of cases too him and his partners. His work is known worldwide and he does a lot of work with Wegeners patients. I don't have his number but this article will give you a link to his page.  (+ info)

Can someone with Wegener's disease live a normal healthy life?

A friend of mine (age 21) was just diagnosed with Wegener's disease. Doctors were saying that the kidneys were in danger of failing, but after tests and biopsy they found out that her kidneys were fine and all her major organs were healthy. She is going to go in for chemo therapy and other treatments, will it be possible for her to live a normal healthy life after this? Is her life significantly shortened?

Anything can happen to your friend at this point, but it looks pretty favorable for her. This disease can be fatal when it is not diagnosed until significant damage has already occurred. When it is treated before damage occur, the disease can sometimes be permanently eliminated with no lasting health effects. Sometimes the disease is stopped with treatment, but it later reappears, and sometimes the treatments don't work. Hopefully, she will respond well to the treatments and never have a problem again!  (+ info)

What is lymphomatoid granulomatosis of the lung?

This disease is unusual, and the underlying cause has been determined only recently, so it is important to get current data on it. The name makes it sound like it is benign, but in most cases, the lesion represents a B-cell type lymphoma (cancer of the lymphocytes). The usual patient with this disease presents with multiple necrotic nodules in the lungs. Biopsy shows a variable number of neoplastic tumor cells (B-lymphocytes) with surrounding reactive inflammation.

Lymphomatoid granulomatosis is a disease which was named around forty years ago for its microscopic appearance (before it was known whether it was malignant). It is classified in the most current system by the World Health Organization into three grades (I through III). The grade is determined by the number of atypical cells and the amount of necrosis in the tumor. The grade I lesions show only little atypia and no necrosis. The higher grade lesions (II and III) show more necrosis and atypia. The tumor is due to an Epstein-Barr Virus driven B-lymphocyte. The higher grade tumors (grade II and III) are usually treated as lymphomas with chemotherapy while the lower grade tumors (grade I and some II) are often treated with interferon.

Diagnosis is by tissue biopsy. The diagnosis is unusual enough that I would want a specialist to look at the tissue. It would be important to have a B-cell stain (such as CD20) and a stain for Epstein-Barr Virus performed.  (+ info)

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