Wegener Granulomatosis

Question: 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.

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

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

Answer: 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 http://en.wikipedia.org/wiki/ Wegener's_granulomatosis Hope this helps matador 89

Question: 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...

Answer: 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.

Question: 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.

Answer: 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,

Question: i have wegener's granulomatosis will i get disability? when i was 9 i was diagnosed with wegener's granulomatosis which 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 immunosuppression and due to that i have been taking prednisone, myfortic, lisinopril and bactrim. i had insurance but after consuming almost $2 million in doctors they kicked me out.. lol and now no other insurance wants to take me.. i am 18 years old and can not work due to my immune system prevents me from socializing becuase i risk of getting a simple cold that to me can be fatal. would they disable me?? i dont want the money.. just the medicare.. help

Answer: I have had Wegener's since 2004. I just recently had a Kidney transplant in March of this year. I would question the meds you are on. I was on JUST prednisone for disease flare ups after I was initially treated with Cytoxin for a year up until my transplant (along with blood pressure meds etc). I live in the upper mid-west and the disease is common in our area. The teaching hospital I go to for treatment deals with these all the time. I even went to Mayo for a second opinion and they never suggested that I be on Myfortic (that is the costliest med, I am on it now because of the transplant) The others are not as bad. Does your state have any assistance program? or have you checked with the drug manufacturers web sites for a contact? They will offer assistance to people that cannot afford it as well. Hope that helps

Question: 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.

Answer: 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

Question: wegener's granulomatosis? medication used to treat illness

Answer: Try http://www.webmd.com/

Question: 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... HE ALREADY KNOWS I'M NOT THAT LOW...I TOLD HIM AS SOON AS WE FOUND OUT...THANKS FOR YOUR CONSERN THOUGH I JUST WANT AN ANSWER STATING WEITHER OR NOT THIS DISEASE MAKES YOU STERILE.

Answer: 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.

Question: Wegener's and pregnancy? 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...I TOLD MY BOYFRIEND AS SOON AS WE FOUND OUT I WAS PREGNANT I WAS JUST WONDERING IF THIS DISEASE MADE YOU STERILE?

Answer: I checked out a website and found nothing to prove that Wegener's would cause sterility. Check out this website, it has a lot of information and facts that might be helpful to you. http://en.wikipedia.org/wiki/Wegener's_g…

Question: What does it mean if the life cycle of the red blood cell is short? Could it be Wegener's Granulomatosis? Serious Responses only. I am studiying again. Patient presents as an atypical cellulitis and shortness of breath Skin presents as systemis lupus but ANA doesnot confirm. thoughts or comments? White count normal. Sed rate not indicative of inflammation. R/O Hughes Syndrome

Answer: many conditions shorten the life span of a red blood cell (normally 120 days). to name a few: increased fragility of the cell from metabolic abnormalities, an overactive spleen, certain drugs or infections, malignancy, or an autoimmune condition (WG is just one of the rare ones -- there are a lot more)...