Looking for Recommendation for Hospital/Doctor

[debhaz22]

I am newly diagnosed with Wegener's and live in South Carolina. I know Mayo in MN, Johns Hopkins and Cleveland Clinic are very good centers for me to go to next, but I'm not sure which one to visit. Can anyone offer their experiences/advice on the above 3 centers please? I appreciate it very much!
Thanks

[Dirty Don]

Welcome debhaz...nice place to visit here! LOL! But, glad you found us, I'm sure you know there is lots of good info and very nice and caring people on here...use it wisely! I'm a Mayo patient in Phx, so am living with Mayo! But, peeps on here have attended Hopkins and Cleveland Clinic, and I don't believe there's much of a difference in quality of treatment from those centers. Some others will tune in with their experiences at some of those places. Best to you!

[debhaz22]

Hi Don (?), Thanks! I really appreciate your welcome, I feel so lost! So the Mayo in Phx has a Wegener's Center or Dr's? I didn't know that, only heard about the 1 in MN.

[Dirty Don]

Hi Deb, nice to meet ya! There is a Mayo in Jacksonville, FL with at least one recommended WG doc there. Someone will let you know soon on here. Mayo here in Phx has a Rheumatology center with a couple of WG experts...well, they are more expert than I! LOL! Mayo tends to be very aggressive with this disease at first, then they are very patient once you are on the right track. I understand your confusion and 'blues' over this...it's scary at first. Well, it's scary for the rest of your life right now. Sooooo, you need to procure the best docs available, and, at the least, get a doc who understands and is willing to consult with specialty docs...there are many who will do this for you. Hang tough...patience, fortitude, and discipline are necessary requisites for getting thru this as best as possible. Keep asking questions Deb!

[Pete]

Hi Debra,

Several of us in Ohio see Dr Alexandra Villa Forte at Cleveland Clinic. Some others see Dr Carol Langford there. My experience with Dr Villa Forte has been very positive. She spent over 90 minutes with me on my first visit last year. She got me established on the most recent protocol for weggies who have stabilized following disease onset. I now see her 2-3 times a year where we review labs, symptoms (or lack thereof), and future treatment.

They are also pretty aggressive with initial treatment with a stronger immunosuppressant, prednisone, and bactrim. She put me on methotrexate a year ago and guided my taper off prednisone.

I've recommended Dr Villa Forte to others, and they have expressed satisfaction (and good results) with her.

Good luck and better health!

[Debbie C]

Hi Deb, welcome to the group and sorry you had to join. I ,like Pete, also go to the Cleveland Clinic but I see Dr. Garry Hoffman. He's a good dr. I'm just a bad paient ! I can't seem to tolerate the meds to well so right now I am just on 5mg. pred. What does your dr. have you taking. If he is not to up on wg. you might want to see if he can get a consult with one of the more experienced drs. The is always the Vasculitsis Foundation website that might help you locate a dr in your area. Good luck and keep us posted

[debhaz22]

Thank you Don, Pete and Debra. I really appreciate how kind and helpful you all are here. The Rheumatologist that I'm seeing here in SC ran some more blood work last week and has me scheduled to see him in 3 months. 3 months! That doesn't seem right does it?? He told me I have Wegener's last week and has me on no meds for it. That's why I think I need to go elsewhere. It looks (just from the limited research I've done in the past few sleepless nights) that Mayo, JohnsHopkins and Cleveland seem to be highly recommended. I'm just trying to sort out what I should do next

[Debbie C]

Yes 3 months is definetly TOO long to wait. You need to find a dr. that knows what he is dealing with sooner than that. Did your bloodwork numbers come back good ? Where is the wg. involvement at...lungs,sinuses,kidneys ? Did they do any kind of biopsy to confirm or just bloodwork ? Get yourself another dr....soon or see if they can't conference one at one of the clinics

[Dirty Don]

If you have the resources and time, go to the one most highly recommended by people on here, vasculitis websites, and so on. 3 months is ridiculous...you need to be treated NOW...the most successful recovery efforts are almost always associated with an early dx...it's pretty simple...NO WAITING! Good luck.

[debhaz22]

That's what I was afraid of. He waited 2 months to tell me he thought I had Wegener's from my blood and urine tests. That's why I need to get in at one of the 3 centers. I'm having another CT scan of lungs on Tuesday because my Pulmonologist pushed for it.