Wegners Granulomatosis ?Anyone know someone with it?

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My dad has been fighting this disease for 7 years now it caused him to go into kidney failure soon after he was diagnosed it has been a horrible disease for him and my family to deal with it seems to be a never ending battle and it seems the disease is slowing winning I hate to say I was just wondering how this disease has affected you or your loved one and what symptoms they have had and what treatments they are using Thank you so much for sharing your stories
please look at this site: www.vasculitisfoundation.org
i think there is a link for patients and their family members to be able to contact/support each other.
i think its spelled Wegener's granulomatosis.  (+ info)

treatments for congenital granulomatosis disease?

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we have many types of granulomatosis nad some of them can be congenital. the most well known one is Wegener's granulomatosis, a systemic vasculitides. for its management Daily cyclophosphamide and corticosteroids or Monthly intravenous cyclophosphamide or Methotrexate can be used.  (+ info)

does anyone know what orofacial granulomatosis is????

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Orofacial granulomatosis (OFG: also known as Melkersson-Rosenthal syndrome, Cheilitis Granulomatosis, and Schuermann's Glossitis Granulomatosa) is an uncommon inflammatory condition effecting the face and lips. People of all ages can be affected, but it is most common in the early adult years.

Source from www.allergycapital.com.au  (+ info)

Wegener's disease information?

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Does anyone know anything about this disease? I know someone who has just been diagnosed so I am trying to find info on it. (Especially whether or not it's life-threatening)

THANK YOU SO MUCH!
Here's a reliable site with information about this disorder.
http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833  (+ info)

how long does it take for the negative effects of prednisone to occur?

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Prednisone will be taken in response to a flair of Wegener's-autoimmune illness-mainly worried about "moonface" and abdomen swelling
I've been on prednisone for about 3 months now for severe autoimmune allergies. I take a 30mg dosage by 10mg oral tablets. The tablets have an incredibly foul taste to them so I suggest swallowing them with some type of food, like pudding or even within a sandwich.

I have developed somewhat of a swollen abdomen, but haven't had any signs of the moonface. The abdomen swelling just appears like larger gut which is somewhat hard to the touch. It almost looks like a ladies belly who recently became pregnant.

I wouldn't let these effects deter you from taking prednisone. This drug has saved me from several anaphylactic reactions & therefore has saved my life.  (+ info)

Could anyone tell me what health condition this is? URGENT?

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My friend has some health problems but her parents won't tell her what it is. All I know is that she might need to take out a kidney, that she coughs up blood (hemoptysis), has stomach and throat pains and is losing weight. I've looked up some stuff but still not sure what it is. Can anyone tell me? I found Lupus, Tuberculosis, Wegener's Granulomatosis, Goodpasture's Syndrome and heredity amyloidosis. Thanks
There is no way for anyone to tell you what it is without any diagnostic tools, ie x rays, blood tests, and examination. Besides what you have found yourself there are probably over 1000 differential diagnosis for the symptoms that you wrote. I would suggest that she have a serious conversation with her parents about what's going on as she has a right to know. How old is she? She should be able to ask her doctor what is going on so that she can deal with it. I would tell her parents that she is really stressed out not knowing and that it is worse than knowing could ever be.  (+ info)

Wegeners desease how many survive this illness?

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My family member was diagnosed with Wegeners Granulomatosis end of December 2008, she might have had the desease since April 2008.
She has been hospitalized from 27 December and is now on a respirator under sedation. She is in a states hospital in South Africa and the dr seem to have no clue of treatment. Is there anyone who can give me information regarding survival etc on this illness
Bird D - Wegener's granulomatosis is an uncommon disorder that causes inflammation of the blood vessels, which in turn restricts blood flow to various organs. Most commonly Wegener's granulomatosis affects the kidneys, lungs, and upper respiratory tract. The restricted blood flow to these organs can damage them.

Besides inflamed blood vessels, Wegener's granulomatosis produces a type of inflammatory tissue known as granuloma, found around the blood vessels. Granulomas can destroy normal tissue. What causes Wegener's granulomatosis is uncertain, but it's not an infection nor is it a type of cancer.

Early diagnosis and treatment of Wegener's granulomatosis may lead to a full recovery. Without treatment, Wegener's granulomatosis can be fatal, most commonly from kidney failure.

Treatments and drugs:
With early diagnosis and appropriate treatment, a person may recover from Wegener's granulomatosis within a few months. In some cases, longer treatment may be necessary. Because the disease can recur, the doctor will continue monitoring the patient's condition after treatment.

Medications
The doctor may prescribe corticosteroids, such as prednisone, to treat the early signs and symptoms of Wegener's granulomatosis. For some people, a corticosteroid may be enough. However, most people require another immunosuppressive drug, such as cyclophosphamide (Cytoxan), azathioprine (Imuran) or methotrexate (Rheumatrex), to counteract the body's immune reaction.

When standard treatments aren't effective, some doctors who are experienced in treating Wegener's are using experimental drugs. One such drug is rituximab (Rituxan), which reduces the number of a type of cell in your body (B cell) that's involved with inflammation. But further studies are needed to see if this drug should be considered standard treatment for Wegener's. Rituxan was developed to treat a type of cancer known as non-Hodgkin's lymphoma and has since been approved for the treatment of rheumatoid arthritis.

Because of potential side effects of the drugs used to treat Wegener's, such as hampering your body's ability to fight off infection, the doctor will monitor the patient's condition while the patient takes them. Drugs the doctor may prescribe to help prevent drug-related side effects include:

Trimethoprim-sulfamethoxazole (Bactrim, Septra) to prevent lung infection
Medicine such as bisphosphonates (Fosamax) to prevent bone loss (osteoporosis) associated with prednisone use
Folic acid, a synthetic form of the B vitamin folate, to prevent sores and other signs and symptoms associated with the depletion of folate in the body from methotrexate use
Surgery
If there has been kidney failure as a result of Wegener's granulomatosis, the patient may want to consider a kidney transplant to restore normal kidney function. A successful transplant depends on finding the organ that minimizes the chances the body will reject it and following a treatment regimen that will allow the body to accept the new organ.

The doctor may determine whether a kidney transplant might be an option. Eligibility to receive a donated kidney will depend on how other organs have been affected by the disease.  (+ info)

Medical question: Significance of + ANCA?

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Maybe it's Wegener's granulomatosis, not sure. Associated symptoms- maculopapular rash that turns into brown hyperpigmentation on lower legs, occasional headaches, nose bleeds very easily, arthritis, and Raynaud's. The rheumatologist has been telling me for years I have rheumatoid-like arthritis secondary to Hep C infection. I've been on every DMARD there is without change- no better but no worse either. Can anyone enlighten me further about the ANCA?
Besides Wegener's, what are some other causes of a + ANCA?
its a blood test that investigates auto immune disorders - mainly vasculitus  (+ info)

Does having Rituximab lower your immune system after having it?

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Husband has Wegeners Granulomatosis
  (+ info)

can dogs detect autoimmune disease in humans?

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I have Wegern's Granulomatosis, a rare, life-threatening, un-curable form of vascular disease, its also considered an autoimmune disease. Its treated with cytotoxic agents such as Cytoxan and/or Methotrexate and Prednisone
No. Most dogs can sense a fair amount about their owner's emotional state, just like people can sense what other people are feeling, but they can't diagnoses diseases. Your dog would probably be able to tell if you're in pain (physical or emotional), but he wouldn't know that you have an autoimmune disease specifically.  (+ info)

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