What does egpa feel like and how so I know if it's a Flair?

[Cathywp]

Because I have been told so many things by doctors who really do not know about egpa I have become super confused. Now my new rhumatologist says I actually do have ANCA negative egpa and it probably caused the brain damage I suffered two years ago. I had weaned off prednizone and azathioprine because of previous doctor recommendations and now I have started methotrexate .... and I have caught the flu from my husband while trying this new drug. I really have gotten so mixed up because I have been told so many conflicting things .....I have no idea what symptoms are egpa and what would constitute a Flair. My legs ache...I just started yesterday to get little sort of electric jolts in the bottom of my foot when I'm trying to sleep....my head is aching.....my legs are super weak....I'm dizzy......and my eosinophils are up to 2.9 yesterday. And I have a cold . When I call thr rhumatologist office the nurse who takes messages tells me that a Flair would be a worsening chest or ear or sinus infection. he consistently tells me to call back only if I have those symptoms. Isn't egpa more than that? I have read that doctors should not rely on chest, ear, or sinus stuff when determining if you r having a Flair because it could just be a cold. I'm super mixed up now. Thanks for listening

[Suzym2u Moderator Vasculitis UK]

EGPA is an extremely rare type of Vasculitis , around a 1000 recorded cases here in the UK so it is important you are seen by doctors who have experience and knowledge. As I understand around 40% of those diagnosed with EGPA are ANCA negative. I hope someone in the Group shares their own experiences with you but in the meantime you may want to read this page from the Vasculitis UK website. vasculitis.org.uk/about-vas...

[tmg20]

As your eosinophils are raised to 2.9 that would indicate a flare.