Vasculitis centers?

[Momof3]

I have seen the recommendations on this post to find a good VF MD who knows Wegs. I know of John Hopkins, are there others? How do you determine if they are good? Do they work in conjunction with your local rheumy or do they take over? I live in Seattle, any on the west coast? Thanks for any information.

[andrew]

The Mayo Clinic is good (Mayo Clinic: Medical Treatment and Research Centers)

There's one in Phoenix.

There's also a list of Vasculitis specialists that can be constulted by your Primary Care doc: Medical Consultants | Vasculitis Foundation

Edit: Not speaking from experience but from what I've heard as I'm about as far away from Phoenix as you can get

[Sangye]

I went to Mayo Arizona for about a year. They were better than local docs, but they're definitely not Wegs specialists. The other Mayo clinics are, I think. I wouldn't recommend traveling to Phoenix.

Any of the VF docs are great, because Wegs is all they do. That's who you want--someone who see Wegs day in and day out. All the complications, all the levels of recovery. What I've learned is that side effects of treatment and the damage from Wegs can be mistaken for active disease, so you really need someone who knows how to tell the difference.

The VF docs consult with your rheumy on a regular basis and guide them on what to do. And, they don't charge.

Many people travel far initially to get a thorough workup from a VF doc and the other specialists (eg, pulm, neph, ENT). You'd go back occasionally for follow-ups as needed.

[Momof3]

Has anyone accessed the Cleveland Clinic for care? My first rheumy recommended I contact Dr. Gary Hoffman at the Cleveland clinic, anyone know anything about them?

[Sangye]

I've heard nothing but excellent reports about Dr Hoffman. Cleveland Clinic specializes in Wegs.

[rkm001]

Has anyone ever heard of Dr. Nabih Abdou. He is a specialist in Kansas City, MO. He was listed on the Vaculitis Foundation also. My Mother will finally get to see him next week after two months of misery.

[Sangye]

I haven't heard his name, but if he's listed by the VF, that means he's an expert. SO happy your mom is getting in next week.

[Doug]

I have seen the recommendations on this post to find a good VF MD who knows Wegs. I know of John Hopkins, are there others? How do you determine if they are good? Do they work in conjunction with your local rheumy or do they take over? I live in Seattle, any on the west coast? Thanks for any information.

I would think Seattle would have specialists with WG patients and WG experience. Oftentimes, the rheumatologist is the doctor you are looking for since this is an auto-immune disease. Pulmonologists oftentimes are the specialists you are looking for because of the signature look of your lung x-rays, so they may be amopng the first to suspect WG.
I haven't had much luck today returning to the right page when I go to VF to create a link, so, if that happends again, just type in Vasculitis Foundation in any search engine- Google's the one I like best- and see what they have to offer in doctors who know what they need to know who are close to you. Beyond doubt, if you talkk with one of these doctors, they may be able to refer you to someone in Seattle or reasonably close on the US or Canadian side of the border.

www.vasculitisfoundation.org

NIRULA, AJAY, M.D., PH.D.
Director, Medical Research
Biogen Idec
5200 Research Place
San Diego, CA 92122
Phone: 858-401-5181 This is the only docotr listed as a consultant with VF who is close to you, but that would stop your doctor from contacting others listed.