ms diagnosis but now looks like it might be egpa

[vicluke1]

Since June i have had multiple steroid courses for asthma and many hospitalisations with little positive effect from use of inhalers. I had a broncoscopy in December with the discharge letter saying impression- egpa would best fit clico-radiologically. Heard nothing since because of covid!!! I get severe pain and my breathing is terrible, steroids send me psycho now too!! Help me please , and advice would be much appreciated xx

[Mooka]

Sorry I can’t help you but would advise you to phone the vasculitis U.K. helpline. You need to see someone experienced in treating vasculitis as soon as possible. Good luck x

[Churg]

I agree that vasculitis UK helpline is your way forward. There are other medications for egpa that might help but you need to be in the care of a professional vasculitis. You must be feeling awful.

[vicluke1 in reply to Churg]

What’s your experience of being diagnosed, was it a nightmare!! Thank you so much for replying , I hope you are keeping as safe and healthy as you can be , Covid is holding up any follow up after biopsies , I had 8 before Christmas!! Been ok hospital 4 times in the last year alone and on the phone to doctors most weeks , they are useless can’t give anything for pain because my breathing is so bad . I’m 36 with a young son and 5 dogs and struggle with everything, I had an active lifestyle until June last year . What sort of pain symptoms do you experience Thank you again

[Churg in reply to vicluke1]

Have you spoken to Vasculitis Uk helpline? By reputation they do just that. No wonder you feel awful you don’t have a proper diagnosis and, therefore, appropriately targeted treatment. The medical profession has very little experience of vasculitis due to its relatively rare occurrence. There are some very good ones,though, with expertise in the subject and you need to find them. Vasculitis UK would I am sure help in this way. You CAN feel better!

[Churg]

Sorry! in the care of a consultant with experience of vasculitis

[John_Mills Volunteer]

EGPA is an extremely rare type of Vasculitis , it is essential you are seen by doctors who have experience, knowledge and understanding of the condition. You can contact the VUK helpline via email if you prefer and we will help you with information and signposting. vasculitis.org.uk/helpline