Diagnosed WG last year seeking new hospital ... - Vasculitis UK

Vasculitis UK

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Diagnosed WG last year seeking new hospital & consultant - Royal Free freaked me out. Said no to meds, didn't go down well. Any suggestions?


WG has attacked my ENT over 20 years, wrongly diagnosed asthmatic. Throat lasered last year after 60% closure &serious issues. Surgery sorted me out (private) otherwise I'm broadly fine. Past history, successful surgical intervention. Consultants trying to force me onto meds. I want monitoring & surgery not meds as I'm broadly fine e.g run 10k regularly. Royal free was like a junkies front room with zero privacy, and I'm not going back but consultant highly regarded. Any recommendations for other hospitals/consultants for ENT WG as loathe to pay private?

2 Replies

I think I've just replied to you by email. Don't have illusions. Surgery without supporting meds will probably need repeating. There's no reliable method of monitoring or predicting. If you are definitely in remission, that's OK but if your subglottal stenosis is not stable, it will recur. Don't go privately. The best vasculitis docs don't see private patients.



I agree with John, Pompey. There is no way round taking the meds if you have any form of vasculitis. This is a disease that is serious and chronic. It can be forced into remission by taking the meds (this will be debilitating at first but it does quickly improve) but it will stay with you and probably get worse if you don't take them.


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