Hello fellow WG mates, greetings from the Big Apple! I was just diagnosed in Oct of 09 but have had symptoms since 1998. However i have not started meds yet due to the side effects. I joined this group to get some information---please share. Any thoughts?
Hi, welcome to the group! You're lucky to be alive if you've had active Wegs since 1998. What type of involvement do you have? What meds did your doc suggest?
I am not sure if its been active that long---but i have always had sinus problems. In 2002, I went the a VA hospital for a nose biopsy and they "told" me that they couldnt find anything, however when i read the pathology report in 2009, it stated that i have a non-specific granulomatos. I currently have the saddle nose, sinus, lung, tratea involvement. ANCA was negetive all three times i took it. Docs are suggesting cyclophosphamide and prednisone.
Hi, and welcome to the group. I am being treated in NYC also. Who do you see for rheumy? I go to Hospital for Special Surgery. I also see (and perhaps more importantly) for your case my ENT is Dr. Robert Lebovics, out of St. Luke's, an extremely well-known guy who deals with all the stuff you are describing (not lungs of course) on a daily basis. He fixes saddle noses for people from around the world (if you are interested -- I'm not presuming, just that I have one also and plan to fix it at some point). He's a great guy and did my windpipe surgery a couple of months ago.
REALLY- I just went to a ENT guy on 67th St who told me that he couldnt fix my nose! He said that i had too much damage! My rheumy is Michael Naarendorp, located in Harlem. Ever heard of him? Its been hard to find a rheumy that accepts my insurance(HIP).
And thanks for the welcome!
If you have lung involvement (I do) you cannot avoid the big guns--either cyclophosphamide/cytoxan/ctx or rituxan/rtx. My Wegs doc said lung involvement is the most dangerous because if you lose your lungs you're dead. (his words) That doesn't mean kidney involvement is less severe disease, just that there are options if you have severe kidney damage.
Who's your rheumatologist? An ENT can't treat Wegs-- gotta be treated by a rheumy who specialises in Wegs.
Hi Tahirah, yes I agree with the above. I have been misdiagnosed and ended with kidney failure, so Wegeners is really sneaky disease. Then it attacked my Lungs, sinuses, ears and eyes. I have damage in all of these for life. Please see a Wegeners specialist ASAP! We care about your well being!
I'm not familiar with that rheumy, but then I'd never met one before mine (Arthur Yee) at HSS. Don't know what insurance he takes. Dr. Lebovics number is 212 262 4444. I'd give him a call if I were you -- he accepts a ton of different insurance, and if there is anyone who can fix your nose, it's him. He works with a plastic surgeon in his office. Besides, he is very aware of the medical considerations to take into account when operating on us WGs.
Thanks everybody! However Dr. Yee does not accept my insurance but Dr. Lebovics does. I am putting calls into Johns Hopkins to see if they can refer me to someone here in New York.
How far are you from Boston? I think that's the closest Vasculitis center to NYC.
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