Is WG contagious?
No, WG is not contagious.

Is WG hereditary?
There is no data that would suggest that WG is hereditary. For example, sets of identical twins are known where only one twin in each set has WG.

Since WG is an autoimmune disease, is it a form of AIDS?
No. WG is characterized by an "overactive" immune system, whereas AIDS is characterized by insufficient immune activity.

What Causes Wegener's?
The cause of WG remains unknown. Though the disease resembles an infectious process, no causative agent has been isolated. Anti-Neutrophilic Cytoplasmic Antibody (ANCA) was found in the majority of patients, and its level appears to correlate with the disease activity.

How often should I have the ANCA blood test done?
If your disease is active, you will need to have an ANCA test every 6 weeks. If you are in remission, you will need an ANCA test every 3-6 months until you've been in remission a year or more. Then, you only need to have ANCA tests once per year. Consult with your physician in your own particular case. Also, it is important to have the tests performed at the same laboratory each time because test results differ from laboratory to laboratory.

Is it necessary for WG patients to get flu shots?
It is highly recommended that you get a flu shot. Patients with WG have lowered immune systems because of the disease and treatments. Thus, they are more susceptible to infections and viruses. Vaccines such as flu shots will be helpful in preventing the flu. In addition, WG patients should receive other vaccines such as tetanus and pneumovax as per approved recommendations.

Are nasal sprays recommended for congestion due to WG? What type?
Topical sprays that you can buy over the counter, aside from salt water sprays, should not used. They do exactly the opposite: They work by constricting the blood vessels. The kinds of sprays your doctor can prescribe are most commonly topical steroids (prednisone-like drugs) and can be used by WG patients for inflammation of nasal tissue, with one provision: We do not know a lot about how steroids work. I don't use topical steroids for people who are acutely ill, in the middle of a Wegener's exacerbation, or in the middle of a sinus infection which I have not had the opportunity to treat. However, I do add these sprays if we are treating acute sinusitis or treating Wegener's and the patient does not seem to be getting better. But I do not use them first because of the potential side effects.

How does a WG patient know if their kidneys are becoming involved?
The quickest way to know if your kidneys are becoming more involved with Wegener's, assuming you already have the diagnosis of Wegener's, is to compare the serum creatinine analysis with preliminary or previous analyses. Creatinine is a substance of impure metabolism, and its constant level in the normal bloodstream is about 0-1.4mg%. If that starts rising, that means your kidneys are getting worse, and they will not filter as well as they should. It is not a toxic substance, but a marker telling you that your kidneys are not clearing what they should clear. If your creatinine level is up, your doctor should point it out to you and perhaps you should go to a more sophisticated test such as a kidney scan, or a 24-hour clearance of creatinine and total protein.

Of the drugs Imuran, Chlorambucil, Methotrexate, Cyclosporine, and Cytoxan, which is the best in treatment of WG?
The best drug that has been tested for Wegener's is Cytoxan. The others are all good, but the problem with the others is, there is no good study to show that they are as effective as Cytoxan.

What about hair loss with Cytoxan?
Cancer patients take about ten times the Cytoxan that WG patients take. Incidence of hair loss in cancer patients is very high. Hair loss is less in WG patients. In a practical sense, I very seldom see much hair loss.

Is exercise recommended for WG patients?
The multi-systemic symptoms of WG certainly can be improved and perhaps even suppressed by exercise. Also, exercise allows one a better state of mind, which frequently alleviates the mood swings which sometimes occur with activation of WG symptoms.

Since being on Cytoxan, I have not had a menstrual period in a year. Is this usual?
Yes, the majority of women on Cytoxan will have no period or spotting, and about 50% will get their period back. If the patient is very young and has normal periods before Cytoxan, she will most likely have a normal menstrual cycle after one or two years. I have given Cytoxan in cycles; that means give Cytoxan in that period away from ovulation. Many centers are now doing that. Before starting Cytoxan, we tell patients that there is a good chance their periods will stop and we can't tell you if it is going to come back, or if you will be able to get pregnant in the future. This should be very clear from Day 1.

Wegener's Granulomatosis

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The NIAID Fact Sheet on Wegener's...