How were you diagnosed?

[Madbiker1]

I was diagnosed with eosiniphilic asthma a few years ago - the asthma came in my 40's - breathing problems and nasal polyps. Two years of back and two to the GP saw me referred to a specialist. I was given mepolizumab - sadly it did not have the hoped for results. I was switched to fasenra which showed promise - you are given larger doses initially - when dropped to two monthly once again things fell away. Xolair is next on the list.

Towards the end of July my asthma got worse - I thought I may end up in hospital but luckily this was avoided. This coincided with my getting aching bones, joints, teeth - even ear ache. My bowel habits have changed as well.

I was beginning to think six years of high doses of pred were catching up with me but then I began to think about vasculitis as this has been at the back of my mind. I cannot see my GP but I have made staff at my specialist hospital aware.

I still work full time but I am beginning to realise this may not happen for much longer.

[Reboundman]

Hi Madbiker1 - in my case I had had swallowing problems for a few years which was eventually diagnosed as Eosinophilic oesophagitis (EoE). Wasnt a big issue I just cut out steak and shewed my food more which seemed to sort that issue. Then earlier this year (about Feb/Mar) I started to get asthma symptoms and really str4iggled with breathing when riding my bike or walking. I was also making strange wheezing noises when breathing at night. Was proscribed salbutamol puffer which seemed to take care of that issue (I certainly didn't connect the swallowing issues with the asthma at this stage).

All was well for a while (although the wheezing continued!) although looking at my ride descriptions on Strava there were a few days where i had said I just didnt feel right, but I seemed to be going pretty well anyway.

Then in early August my wife and I went to Edinburgh for a few days city break and that's everything happened, and very fast. Felt strange even before we left, strange very uncomfortable aching deep in both arms, second day we were there I woke up with a completely swollen face with both eyes puffy and almost closed. Also got strange rash on my torso and back. Started to get pins and needles in feet and hands. When back home things got much worse in the next 3-4 days: on the Monday suddenly couldnt walk properly, even up and down the stairs; lost all strength in right hand, and then finally lost sight in my right eye which is when I called the ambulance. Horrible experience, GP was pretty clueless but then EGPA is a very rare condition so I dont really blame them. Only thing I would say is when I visited and clearly could hardly walk from the waiting room to the doctors room they may have thought this was worth a bit of investigation rather than 'take paracetamol for a few more days and see what happens'!

Once I got to hospital I was diagnosed with EGPA within 36 hours. For most of that time the consultants were working on assumption I had MS so that in itself was a very scary few hours.

I feel very fortunate that most of my sight and feeling/strength in my had returned quite soon after the initial 'hit it hard. hit is fast' steroid treatment. I have lost a lot of strength and feeling in both feet and lower legs but can still walk ok and am bike riding my mountain bike and Zwift (although quite a bit slower of course). I actually got in a hilly 45 miles in on short break to Mallorca a few days ago but it was very hard work!

Watch out for this thing - when it hits it hits hard. The visible issues are what happens to the peripheral nerves (ie, hands, feet) but the real damage can be happening to the vital organs like heart, lungs, kidneys etc so be vigilant. Not sure if this helps at all - all the best.

[Katie18]

Hi I was diagnosed after a sudden onset of asthma in my early 40’s. I had also been suffering with bad allergy symptoms- lots of sneezing fits, runny nose and feeling very tired. I had a flu type virus which I couldn’t shake off and the GP kept telling me I was suffering after effects. They did send me to the hospital for allergy tests but I didn’t get the results until after I had been rushed into hospital some months later. I started getting lots of back pain. Then I was referred by my GP for a scan at a community hospital and collapsed getting out of a wheelchair. I was incredible pain - the out of hours GP referred my to A&E and they traced back my allergy tests that showed incredibly high blood markers and diagnosed EGPA or Churg Strauss. The clues are usually in the bloods. I was then taken into hospital the next day and given high doses of steroids through a drip. The problem with vasculitis is that it is so hard to diagnose. If you are in any doubt do push to be referred to a rheumatologist. I hope you start to get better soon

[Reboundman in reply to Katie18]

Yes I agree on the bloods - I was fortunate that I'd had a blood test a few days before being taken to hospital from my GP and the results were accessed on my way to hospital so they already knew about my hight CRP and eosinophil counts - that probably saved 24 hours of messing about which could be why I can still move both of my feet!

Get a blood test asap and get CRP and eosinophil count checked

[Madbiker1]

I went back to the hospital today. I was told I am being switched to omalizumab. I mentioned about my pains and pins and needles in my legs and feet. The consultant asked for bloods snd wants tests on my nerves - he acknowledged vasculitis was a possibility but thought it was unlikely.