how many weggies is your WG doc treating?

[Ruotsi1]

I am we at this WG thing and I just thought a specialist would have a lot more than 20-30. Not sure why... I do feel comfortable with my doc and confident in her knowledge, so I guess that's all hat matters.

[Ruotsi1]

And she's a rheumatologist vs a GP (assuming GP is general practitioner).

[annekat]

Why don't you think your doc is a specialist Ruotsi1? Never heard of a GP having that many Weggies and not being a specialist.

Here it is coming down to the definition of a specialist. There's been talk on here in the past about docs needing to have seen something like 100 WG patients or more before they can be considered specialists, and the implication has been that no one who isn't on the VF specialist list is a specialist. But I agree with you Phil, that a doc who has successfully treated 20- 50 WG patients or more could be considered a specialist. Maybe not a TOP specialist, but a specialist. After all, how often does a doc get to treat WG, and after that many, he or she would know a lot about it, a lot more than most rheumatologists and other docs.

[annekat]

I am we at this WG thing and I just thought a specialist would have a lot more than 20-30. Not sure why... I do feel comfortable with my doc and confident in her knowledge, so I guess that's all hat matters.

I think it is important to have confidence in our docs and I would have confidence in someone who had treated that many WG patients. True the top specialists have seen a lot more than that. But we can't all go to those, and it is important to know about docs with considerable WG experience who might be accessible to us. These docs can always consult with top specialists if they need to, and they should be more than willing to.

[pberggren1]

I am we at this WG thing and I just thought a specialist would have a lot more than 20-30. Not sure why... I do feel comfortable with my doc and confident in her knowledge, so I guess that's all hat matters.

I see what you mean now. Ya, she would not be a Wegs specialist per say, but at least she does have some experience.

[whatthewhat]

Went to the rheumy clinic yesterday for an appt for our daughter (pediatric rheumatology team at Children's hospital Los Angeles) and Dr. Reiff said they have 18-20 patients with active Wegs (more in remission.)

[drz]

I doubt if everyone who might have expertise treating Wegs wants to be listed on the Vasculitis Website. I think part of being on there conveys a willingness to do free consultations too from what I read about the web site. Some people might feel they want a balance and variety of other patients too so might not want to attract more Weg patients than they already have or naturally get without advertising for more.

[pberggren1]

That's a good point drz. I will ask my doc about this next month.

[annekat]

I, too, think this is a very good point, drz. Part of being associated with a major center may be willingness to do consultations, etc. In any case, this point of view would imply that there might well be a lot more good and experienced Wegs doctors out there. That is why Andrew's idea is such a good one, of us having a database of Wegs doctors that we feel are good or even excellent.

[pberggren1]

Consultations work a bit differently here in Canada. I don't think docs here do consults for free and if they do it is very rare. I know my doc did a couple consults for patients that were not his for other docs far away but he did get paid for it. It was just a one time thing.