Frustrated over different opinions re EGPA diagnosis

[ElaineRH]

Hi I was diagnosed with EGPA in the Brompton year ago after a week there in IV steroids. I went for a second opinion as my treating hospital wouldn’t listen to me when I said my declining health and lung function was not just asthma. I have have many annoying other EGPA related symptoms such as nasal polyps removed twice. Post discharge I was on 50mg pred which failed to keep my eosinophils down. Eventually (back at my local hospital- how still haven’t confirmed my diagnosis one way or the other) and after a year on 20-40mg pred, 3months on Mepo(which made my breathing much worse), I was given 80mg of triamcinilone and started Azathioprine. I have been much better now for 6weeks and hope that I may now be in remission. It has been decided I think that oral steroids do not work well for me ( I told many consultants that they are not effective for my severe asthma often in the last 20 plus years and finally they have seen the light and agreed!) I am ANCA negative which seems to make the god like consultants think that the EGPA diagnosis from London be wrong. I am very frustrated but have decided , after advice from my GP, my asthma specialist in my local hospital and the Brompton that I should not worry about the possible difference of opinion in the diagnosis, and focus on the treatment I am getting. It seems my lungs and gut are most likely to be worse affected, although I jget lots of vision problems and there is some damage shown on my brain scan. I try to keep positive, exercise as much as I can and am still working full time although this is getting much harder to manage. BTW my symptoms and high eosinophils seemed to have been triggered following a pneumothorax sustained by poor care in my local hospital during an asthma event- not sure it this could have triggered things??

[egl1966]

Hi Elaine, I was found to have negative P & C anca 4 yrs ago and 3 lesions in brain nothing much else other than puppet like actions when having a bad day - then they moved from Vasculitus to MS after lumbar puncture

My point is due to type 1 diabetes they didn’t wish to try steroids thus azathioprine & I have felt so much steadier on my feet since taking - still severe fatigue and pain however I can walk almost normally BUT due to side effects of this immunosuppressant they say 3-4 yrs is max time one is recommended to take it so March 2019 I await their decision on what next !

Anyway I don’t think I will have been of any help but let me know if you wish to ask anything of me

Best wishes

Gill

[Cherrynass]

Your symptoms sound similar to mine although, as yet, I’m undiagnosed. I’ve had polyps removed approx 14 times - literally cannot remember! Eosinophils have been high for at least 11 years and for 3 years I’ve had problems with vision, gut and heart rate. Pushed to see cardio and after brief consultation he suspects autoimmune illness. GP just takes things too lightly 😡

[Michael-B in reply to Cherrynass]

Hi Cherrynass, wow 14 times. You could definitely be suffering from what I accidentally discovered after having my polyps removed. Please read the thread I just posted and I really hope it helps you in some way. Cheers, Michael.

healthunlocked.com/asthmauk...

[Cherrynass in reply to Michael-B]

Ewwww I’ve read your post and that’s amazing! I did once blow a polyp out and took it to the GP in a little jar!! I have had FESS the last two surgeries so I feel they’d have seen any possible alien like yours and I’m managing quite well at the moment. Have you had FESS? That’s functional endoscopic sinus surgery so they use a thin endoscope to go right in and around I believe!