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Ed Becker:
Is there such a thing as a "vasculitis doctor", or a specialist who focuses just on vasculitis diseases such as PAN? Often I'll be asked by new members is I can recommend a doctor who "knows" about PAN. I always tell them a rheumatologist should take that role. Is this accurate?
Dr. Kathy McKinnon :
All rheumatologists receive training in the diagnosis and management of vasculitis, including PAN. However, rheumatologists in remote locations and/or community based settings who do not see these diseases often frequently refer vasculitis patients to tertiary care centers/large university hospitals where these diseases are seen and treated more often.
Ed Becker:
Are all rheumatologists created equal? By that, I mean does knowledge about specific vasculitis diseases vary from doctor to doctor? Maybe some rheumatologists know more about PAN than say, Takeasu or CSS.
Dr. Kathy McKinnon :
All rheumatologists should know the fundamentals of all of the vasculitides. However, there are some rheumatologists who focus their practice and research on only vasculitis, or a specific type of vasculitis.
Ed Becker:
Why is going to a rheumatologist the best thing to do if you are suspected to have vasculitis or dx'ed with it. Why are they uniquely qualified to treat it?
Dr. Kathy McKinnon :
Rheumatologists are routinely trained in diagnosing and managing vasculitis, but so are nephrologists, pulmonologists, and a few other subspecialists. However, many subspecialists that focus on disease and treatment of one organ are not as familiar with managing the multisystem involvement that can come with vasculitis. That is why we are most often involved in the care of the majority of vasculitis patients.
There are many patients that I have seen who have had symptoms for quite some time before they were diagnosed, and some that were not diagnosed until they were critically ill.
The initial signs and symptoms of vasculitis can be very nonspecific-such as fatigue, muscle aches, joint pains-that could easily arise in much more common conditions. I have many referrals from primary care doctors who have put the pieces together and suspected vasculitis-but the rarity of these diseases and diverse manifestations make it difficult to diagnose vasculitis right away for anyone sometimes, even rheumatologists.
Many patients are referred to rheumatologists by their primary care physicians or other subspecialists. Often this referral is made based on their knowledge of the rheumatologist's expertise, but often it is made based on location, insurance issues, etc.
The first step when meeting with any new doctor, including a rheumatologist, is to make sure that you come to the visit prepared with all of your records-from personal experience this really helps the first visit become more productive and often saves time in getting to a diagnosis.
The next step is to get a sense of how your relationship with this doctor will develop in that first visit.
It is hard to build a good therapeutic relationship with a doctor you don't feel comfortable with for whatever reason. It's important to realize that not all personalities automatically work well together, and not to feel that it is your fault if you feel uncomfortable with any one doctor.
I think that most of us realize this and are eager to help patients develop a trusting, productive relationship, if not with us, than with a doctor they feel comfortable with.
It is easier to make difficult decisions and deal with illness, side effects of treatments, and other problems when you have developed a relationship with someone you respect and trust. Lastly, if it is unclear to you if your rheumatologist is experienced and comfortable in managing patients with vasculitis, start by asking your rheumatologist directly.
Many physicians are very prompt and willing to seek assistance from other specialists in their own field if it is a disease that they do not treat often, or if there are others in their practice or area that are particularly expert in a certain area.
If you are still not sure, you could discuss this concern with your primary care physician. If they are not certain, asking advice from a university-based or tertiary care medical center in or near your area is a good next step. Of course, those of us involved in the PAN Research and Support Group are always available to help too!
