View Full Version : Toronto or Canada Wegener's Specialists?

06-21-2010, 04:28 PM
I am wondering if anyone of our Canadian members has seen an actual Wegeners Specialist in Canada.

I have heard of a Dr. Simon Carret in Toronto but am not sure if he is a Wegs Specialist.

By Wegs Specialist I mean one that sees a hundred or more Wegs patients per year.

Any help would be greatly appreciated.


06-21-2010, 04:54 PM
I just found out that Dr. Simon Carette is the director of the Vasculitis Clinic at Mount Sinai Hospital in Toronto. This clinic is part of 4 other clinics that are part of the VCRC- Vasculitis Clinical Research Consortium. Maybe I could go there and see him and other Wegs Specialists like an ENT. Maybe they are not as good as Mayo but I think my provincial government health insurance will cover a visit to him. I have his number now and will call in the morning to see what how many Wegs patients he sees.

06-21-2010, 05:23 PM
That sounds like it might be the right place for you! :)

Good Luck.

06-21-2010, 09:11 PM
Yes, I am going to call there when they open up this morning. I will also call the government insurance to make sure they will pay for the visit and other things they may want to do there. A return flight to Toronto is about 600, not too bad.

I am also going to call that new ENT that my regular ENT wants me to see. I want to know when I can get in to see him to get his opinion on my state of things in my sinues for the last few months. From what I have found online I would classify what I have as chronic sinusitis.

06-21-2010, 10:47 PM
I just called Dr. Carette and would be able to get in to see him by the end of July. The lady I talked to said I would have to get a referal from my doctor and they would send all my recent records to Dr. Carette. He would then review my records and then his office would call me to set up an appointment. I asked if they have an ENT in their department. She said no but they do regularly consult with one ENT that specializes in Wegs. I asked how many Wegs patients that Dr. Carette would see in a year and she said over 200. I am a little more excited now. I figured Toronto would have a Wegs Specialist. Tornto has a population of 5 million and a population of over 12 million within a 100 mile radius.

06-21-2010, 10:56 PM
Starting to sound very good! :)

06-21-2010, 11:26 PM
Yay Phil! That would be awesome.

I had suggested Mt Sinai awhile back because they're doing that huge Wegs genetic study. I can't imagine there are just researchers and no treating physicians with a study like that. I sure hope this goes well for you, Phil. You're a trailblazer for your fellow Canadians. :)

06-21-2010, 11:36 PM
Hi Phil,

I've never posted on here before but always checked out the posts from time to time. I am from Toronto and have seen Dr.Carette for the past 8 years and he is amazing. He became my doctor at 18 when I had to switch over from the Hospital for Sick Children. He is extremely knowledgeable and very kind. I could not ask for a better doctor. I have also been participating in the VCRC since its inception. If you have any other questions about Toronto or Dr.Carette I would be happy to help out. I hope it all works out for you.

06-21-2010, 11:46 PM
Thanks Jack and Sangye,

I guess I can't remember you mentioning Mt. Sinai before Sangye. Whick study are they doing Sangye?

Thank you Ashely. Once I get the appointment I will send you a private message from this site. Maybe we could even meet. Have you ever met any other Wegs patients in person?

06-22-2010, 12:24 AM
Phil, you can find the Mt Sinai study on the VF website. It's still open as far as I know.

Ashley, it's nice to meet you. How wonderful that you can help Phil out right away. I hope you're doing well. :)

06-22-2010, 04:22 AM
Phil, if you are coming to Toronto and want to see a great ENT I see Dr.Witterick who is also based out of Mount Sinai. Again, another amazing doctor. I hope you are able to get the appointments you need and get seen sooner rather than later. You would definitely be in good hands at Mount Sinai.

Sangye, I am doing well. I have had wg since I was 13 (now 25) and have not flared until last year at this time. I just finished up with cyclo and switched last week to leflunomide. It's a drug used mainly for rheumatoid arthritis however they have been having much success using it with wg. I was on methotrexate since I was 13 with success (maintained a remission for 11 years) but for whatever reason has not worked in the past year. I also tried imuran this year and was not able to maintain remission with it either. So, I am hoping this new drug is the ticket. I hope all is going well for you!

06-22-2010, 11:37 AM
Thank you Sangye for the info about the Mt. Sinai study.

Thank you Ashley for the info on Dr. Witterick. I hope this new drug, leflunomide, works for you. I have never heard of it before. Can you tell me more about it?

06-22-2010, 01:38 PM
Ashley that is great. Hope you stay in remission. I will google Leflunomide.