I like parts of this link on problems with diagnosis and treatment of GPA.

[drz]

http://www.diabetesed.net/page/_files/autoimmune-diseases.pdf

We can all endorse these statements I believe:

Streamlining the Process of Diagnosis:
The autoimmune disease treatment puzzle is complex. To obtain proper treatment, patients must visit awide variety of specialties within medicine. Because autoimmune diseases affect multiple organs andsystems in the body, teams of physicians ranging from rheumatologist, ophthalmologist, neurologist,and gastroenterologist often are needed to treat an individual’s symptoms separately. This method oftreatment is time consuming and often fiscally wasteful as there is typically no model for proper coordinated care amongst medical systems and physicians to monitor adequately diagnostic testing andprescription drug treatments. Also, the addition of new cutting edge biologic treatments forautoimmune patients requires an even higher level of coordination and expertise from physicians asthese treatments, while revolutionary as lifesaving and quality of life-enhancing tools, must be heavilymonitored for short-term and long-term adverse side effects and dosage issues.In essence, the overall “system” is broken for autoimmune disease patients, putting patient safety at riskand opening the door for the following additional barriers to care and wasteful healthcare expenditures:

Medical practitioners do not recognize autoimmune diseases as a disease category.Medical history questionnaires do not inquire whether patients have a family history ofautoimmune diseases.There are very few standardized tests for many of the 80-100 autoimmune diseases.Medical education provides minimal training about autoimmune diseases

[drz]

Another good quote on why we need to raise awareness of AI disorders:

It has been scientifically proven that these diseases are genetically linked; therefore, family history plays a major role. If the patient doesn’t know to tell the physician of a family history of autoimmune disease and the physician doesn’t know to ask, patients are destined for years of misdiagnosis or no diagnosis; and billions of dollars are spent that could have been saved with an increase in awareness. Further illustrating this need for awareness is a study published in the Journal of Insurance Medicine, 2008, in which large managed care databases revealed reduced health care costs after the diagnosis of celiac disease. According to Peter H.R. Green, M.D., Professor of Clinical Medicine and Director, Celiac Disease Center at Columbia University Medical Center, “We now have evidence that the increased awareness and diagnosis of celiac disease would benefit not only the patients but would result in health care costs savings.

[Girly3800]

I concur. I also believe that the primary care provider is vital to the management of all the specialty doctors. I have believed that since my husband was diagnosed three years ago. I have added another specialty to that list of vital doctors and that is infectious diseases. Those doctors also view the patient as a whole and assess all aspects not just the one part of the body they have studied the most.
I also am a firm believer that every patient needs an advocate through the entire process. This in addition to whatever involvement the patient has in their care. Some patients participate more than others.

[Birdie]

I have added another specialty to that list of vital doctors and that is infectious diseases.

Everybody else completely missed a bucket load of serious infections, blindly calling it all Wegeners. Knowing little about it, seems as if they look up WG symptoms and see sinus issues in the list (for instance), then look no deeper to find that MY sinus issues were massive infections rather than WG induced. Can't blame the average doctor too much, they have a bucket load of restrictions on them and their time.

[Girly3800]

Yep - my husband lost half a lung to bacterial pneumonia - not related to WG (at least not directly). Took a long time after the lobectomy to correctly diagnosis the actinomycis.

[drz]

A good Weg specialist knows that Wegs makes you very susceptible to any infections but treating the Wegs alone will not deal with the related infections. Usually we require an antibiotic and some times IV ones and often more than one for serious infections since they are very likely to kill us.

[Birdie]

A good Weg specialist knows that Wegs makes you very susceptible to any infections but treating the Wegs alone will not deal with the related infections. Usually we require an antibiotic and some times IV ones and often more than one for serious infections since they are very likely to kill us.

My last infection was in March. Treating it is what put me in the wheelchair and knocked me down so far that I'm on social security dissability.

The worst event was seven days in the hospital. Most of that time I had three or four antibiotic IV bags running at the same time, with other IV's as well. During some of it they were drawing blood every two hours. The infectious disease doc threatened to pitch a tent in my room.