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brettgrant99
10-28-2015, 04:12 AM
First off, I underwent treatment (Rituxan) about 18 months ago and have responded very well to it. Currently I take methotrexate for remission, but no more of that dreaded prednisone. Blood draws every six weeks or so. I haven't been on for a long time, simply because I have been busy. I am in the process of moving from Tucson, AZ, to Seattle, WA. Why? Because my family and my wife's family live up there. I am looking for Doctors up there. I have tried some cold calls, but I typically get receptionists that say something to the effect of, "All of our Doctors are specialists in that." I've asked my doctor, he claims that people up there are doing research, but he doesn't know who. The Vasculitis Foundation directed me to Portland. I don't really want to go there. I found a guy in Tucson, I should be able to find a guy in Seattle.

Any suggestions?
Brett

Pete
10-28-2015, 05:31 AM
I recall some folks mentioning wegs specialists at UW Medical Center. Perhaps Anne will chime in with a name or two...

brettgrant99
10-28-2015, 07:08 AM
That is what I am hoping for, someone at UW, or Swedish, or Harborview.

Thanks,
Brett

Alias
10-28-2015, 10:29 AM
You might consider checking the rheumatology department at Virginia Mason. I got very good treatment there, at their downtown facility. The physician I started with is no longer there, but they have a good group there from what I can tell. You can check out the individual bios on their website.

mishb
10-28-2015, 07:31 PM
Great to see/hear from you again Brett.

I'm glad you are off pred and have found a comfortable remission.

I can't help at all with a specialist, obviously, but I just wanted to say HI

annekat
10-29-2015, 04:50 AM
Hi, Brett. I'm glad you are doing so well. Congrats on getting off the pred, something I've not been able to do in the 4.5 years since dx. I'm in Olympia, and don't see a WG specialist, though of course I should. The drive to Seattle is difficult for me with some of my residual symptoms such as double vision and dizziness. Of course, I could take the train. Anyway, I've heard of many good rheumies and other docs in the Seattle area. The one that stands out as being mentioned a lot is Dr. Gardner at the UW Rheumatology Clinic. I know there are others, not only there, but at Virginia Mason and Swedish, whose names I've heard but don't remember. If you are on Facebook, find the Northwest Washington Vasculitis group, and join it. There are people on there who can give you names of several docs whom they have found to be very good in the area. In the meantime, I'll try to find out some of them, too. I know one at Virginia Mason was mentioned just recently either on that group or the Vasculitis Social Group, another one on FB. Best of luck with your move and getting settled in here.

me2
10-30-2015, 02:34 PM
I asked for a referral quite some time ago from one of the VF doctors. He referred me ... to the doctor I was already seeing. hahaha

I have been seeing Dr Gardner at the UW Medical Center in Seattle for several years now. He is very competent , up to date and a nice guy. His staff is very good too.

Once Anne finds a good doc in Olympia I won't have to make the 160 mile drive any more. I'm waiting patiently for this...

annekat
10-30-2015, 03:08 PM
Once Anne finds a good doc in Olympia I won't have to make the 160 mile drive any more. I'm waiting patiently for this...

Ha, ha, like I've been trying so hard. There's a rheumy right on the west side of Olympia named Dr. Choe whose online blurb says he has vasculitis experience. And he was recommended by someone on the Northwest Washington Vasculitis group on Facebook. More than a year ago, my ENT said he'd refer me there. But the guy isn't regionally or nationally known as a vasculitis expert so I'm continuing to procrastinate, although he'd likely be better than the pulmy who is treating me now. The pulmy is actually quite a good doc, and I appreciate that he's worked with me since dx to the best of his ability and I've done very well. But I'd like someone with more of an overview and more experience. Been talking about it for years. OK, Kirk, keep bugging me about it, and I might do it, but I can't promise he'd be anywhere near as good as Dr. Gardner.

brettgrant99
10-31-2015, 12:50 PM
So I called and made an appointment at the UW Rheumatology Clinic. I wasn't very insistent to get Dr. Gardner, they said the only one taking new appointments is Nicole Keiffer. In March. Anyway, I've got a name and will talk to my current Dr, and things can change if needed. The appointment taker was pretty nice, which isn't always true of various doctors that I have called in the past. I'll let you all know how it goes.

Brett

annekat
10-31-2015, 02:20 PM
Brett, I remember someone mentioning that there were some women rheumies at UW, colleagues of Dr. Gardner, who seemed very capable, informative, and helpful on an occasion when Dr. Gardner wasn't available and they were filling in. I can't imagine they'd have any bad docs there and I'd expect that they all work together and consult among each other, especially when difficult cases crop up. Plus, in the same facility would be ENTs, nephrologists, eye doctors, pulmys, etc, with experience in vasculitis, I'd expect. One of these days I'm going to have to learn to take the train and there's a friend in Seattle who'd help show me the ropes of getting around by bus; according to her, Seattle has an excellent transit system.

drz
10-31-2015, 02:36 PM
I found that short of getting an expert GPA doctor with experience, the main thing thing is to get some one that seems vested in keeping you healthy. Often a new, younger doctor also seem willing to enjoy the challenge of learning how to care for some new exotic disease like GPA if they have an expert for back up and consultation.