Which specialist/clinic?

[Momof3]

I am trying to figure out which clinic/specialist to go to. I have been treated since March of 2009 by my local Rheumatologist and the pulmonary specialist at University of Washington. I have been treated w/ methotrexate and prednisone. My pulmonary test 2 wks ago showed a 20% decrease in oxygen absorption and they wanted to treat by increasing my prednisone. I am looking for another opinion and am wanting someone who specializes in this disease to consult. I am looking at Dr. Seo at John Hopkins, Dr. Specks at Mayo or Dr. Hoffman at Cleveland clinic. Any opinions? Is there an advantage to going to a major institution like Mayo? I don't want to get the run around or just be an "teaching case" in a clinic. What do you recommend??

[Sangye]

You are right to seek expert opinion and definitely right on about being a teaching case. It doesn't matter which of the VF docs you go to-- they're all outstanding. Mayo, Boston University and Johns Hopkins are the main centers. All provide excellent care, including the other specialists you'll need to consult. The wonderful thing about going to the big centers is that the specialists they send you to (eg pulmonologist) are the ones who see all the Weggies. So every one of the docs you see knows Wegs very well and already has a great working relationship with the main Wegs doc (rheumy) who will be overseeing your care.

[Momof3]

Thanks Sangye for the confirmation. I was feeling pretty confident w/ my care and am an RN but the recent news about my PFT was disturbing since I wasn't "feeling" any differently.
Any of you who go to Cleveland Clinic...do you have problems being linked up with specialists? I am leaning toward Dr. Langford but know that Mayo and JHU are large networks of specialists. Not so sure about the Cleveland Clinic.
Wish there was a center in Hawaii.. the Northeast in January is not very appealing- Brrr!

[Psyborg]

They have quite a few specialists at the Cleveland Clinic as well. I believe there are about 8 Weggie specialists there.

[elephant]

Mom of 3, Hi...I am a RN too and chose Dr Langford at the Cleveland Clinic and she is very good. The ones that Sangye stated are all good places.

[JanW]

There is also a new vasculitis center at University of Utah -- I don't have the name of the doc, but you can go on the Vasculitis Foundation's website and find it I'm sure. If you are in Washington, that's probably closest to you.

Of the 3 you mentioned, all are terrific and I can add that having been to the VF Symposium in July, Peter Merkel at Boston is really beloved by his patients as well.

[Jaha]

I see Dr. Alexandria Villa-Forte at Cleveland Clinic, a rheumy and a WG specialist. I don't seem to have any problems getting an appt at any time. She is an amazing doctor and is very personable. She studied under Dr Hoffman and always takes her time with me. I was just there on Friday and she is changing my meds from Meth to Imuran. I went to CC for a second opinion and I am confident in the treatment that I am now getting.
Good luck to you,
Jana

[Momof3]

Thank you everyone for your help. I have an appointment w/Dr. Langford in February but am asking my local rheumy to do a physician to physician consult with her before the end of December. I am hoping she will.
The MD in Utah is Dr. Curry Koenig and Dr. Langfords receptionist mentioned him, said he trained at Cleveland. I might go there if my MD won't do a phone consult. The plane tickets to Cleveland are pricey and Utah is less so, but still more than I want to spend on this stupid disease.

[Momof3]

Jana, why did she change you from Meth to Imuron? How long where you on the meth before they decided it wasn't working? I have been on Methotrexate since April 09 and take 27.5mg SQ every week. I am also on prednisone, down to 10 mg but stuck there.

[elephant]

Momof3, my local Rhuemy called Dr Langford before I went to see her, I was not doing well and so glad she called her. I am also glad I got to meet her too! I go to Cleveland Clinic once a year, I feel that since I am still taking a bunch of medicine for this disease I need to see her yearly. Hope all goes well and your doctor contacts Dr Langford soon.