Questions for Dr Seo

[pberggren1]

Thank you Sangye.

This is all very interesting. My doc also told me a while back that they know very little of the actual mechanisms of Wegs and how rtx controls Wegs.

[Brooke]

That is just crazy, I am going to for sure ask my doc why the solumedrol was only used during the first infusion both times. I wonder how long it stays in our systems?

[Sangye]

I would love to know the reason for that, Brooke. You're getting treated at Mayo, aren't you?

[Brooke]

Lol, yes I am, Dr. Karina Keogh in the Pulmonary department.
Her secretary did say she is a Wegeners specialist/expert... Are there actual Wegener's Experts?
I do like her a lot and so far she has helped me a great deal so I trust her.
I see her in August, should I personally ask her if she is a Wegener's Expert?

[freakyschizogirl]

Big thumbs down from me regarding the high dose Solumedrol...My mum recently had a bit hit of prednisolone and it did her no good, like you Sangye it made her feel worse, not better.

Brooke, I wonder if any doctor can actually be called a Wegeners expert as its so wide ranging and varied from person to person.

[Sangye]

The purpose of the solumedrol with rtx isn't to make you feel good, it's to prevent an allergic reaction.

Yes, there are Wegs specialists. I assume Dr Keogh is, but I'm not sure. Ask her if she specializes in treating Wegs.

[drz]

Lol, yes I am, Dr. Karina Keogh in the Pulmonary department.
Her secretary did say she is a Wegeners specialist/expert... Are there actual Wegener's Experts?

I see her in August, should I personally ask her if she is a Wegener's Expert?

I am unaware of recognized credentialing organization that certifies any doctor as an expert in treating GPA. They should be board certified in their specialty such as rheumatology or nephrology or their field. They should list vasculitis as one of their clinical interests. The key might be how many patients have they treated, how many are they currently treating, and how much education have they had in treating this illness by attending symposiums and conferences. The doctors listed at the Vasculitis Foundation indicate they are interested in treating Vasculitis and feel comfortable enough to consult with other doctors that wish to have a consult but I suspect many "experts" do not choose to be listed there.

A good general question is to ask about their experience in treating GPA patients and their general philosophy about treatment and then to decide if you are comfortable with their answers. I like to ask who would they consult if your treatment runs into a snag. When they tell me they have consulted with Specks, Merkel and Falk I feel reassured.

[Sangye]

The other factor I'd look for is a doctor who is actively involved in Wegs research.

[Jack]

Agree with Sangye.
I have Googled all mine against Wegener's and checked out the research papers they have written or that their work is mentioned in. I'm lucky enough to be close to a Vasculitis research group in a teaching hospital so there are several consultants who are leaders in the field.

[drz]

The other factor I'd look for is a doctor who is actively involved in Wegs research.

I think a good doctor could keep up with the research in the field without being any active researcher. Some researchers are also great clinicians but some researchers may develop a pet theory they want to prove and not be as open to all the research findings or lack the personality traits to be a good clinician. Some doctors do not do well working with live or awake patients who ask questions and may specialize in reading x-rays or studying tissue samples.