Need help please

[Rarity1]

Hi everyone, I’ve recently been diagnosed with EGPA Vasculitis after suffering different symptoms for a few years and then fighting for my life at Christmas with severe pneumonia. I came out the other side a changed man but I’m struggling to come to terms with what is happening with my body at times! Are there others out there who have this? I’m on steroids amongst other things to try and control the symptoms.

Thanks Steve

[nanaC]

Yes there are others of us on here. I myself was diagnosed in 2016 after being hospitalised for 12 days, where I spent a week in high dependency and was treated with high dose steroids, cyclophosphamide, and Plasma exchange. I was Anca positive, and suffered a pulmonary haemmorage , as well as kidney and brain and sinus involvement. I achieved remission and have been on maintenance doses of steroids and azathioprine ever since.

My own personal experience is that the first 6 months were really tough, but I now live a fairly normal life. I trust you are receiving treatment from someone experienced in Vasculitis .If not you can check with the helpline. I wish you all the best as you go forward.

[Rarity1 in reply to nanaC]

Thank you so much

[John_Mills Volunteer]

EGPA is an extremely rare type of Vasculitis , it is essential you are managed by doctors who have experience, knowledge and understanding of EGPA

The Vuk helpline link can be found here vasculitis.org.uk/helpline

The EGPA information page can be found here vasculitis.org.uk/about-vas...

[Rarity1 in reply to John_Mills]

Thank you so much

[Chipper03]

Yes, I was diagnosed 12 years ago. Getting the diagnosis was an achievement in itself after many years of deteriorating health. Over the years medication has helped hugely to manage it. I have adjusted my life activities, such as I changed my job to something less strenuous but more recently have managed to return to elements of my original career. I would describe myself now as active and live a fulfilling life, although it looks a bit different from pre EGPA. Looking back my only advice would be to take it slowly. All the very best.

[Rarity1 in reply to Chipper03]

Thank you so much for your advice, really appreciate it

[EGPAGuy]

Yes there are others out there. I have had a more fortunate path having been diagnosed relatively quickly largely due to research done by wife enabling me to get the right help before severe symptons developed. Lifestyle changes and a lifetime of drugs are inevitable but once controlled life can be normal.

[Rarity1 in reply to EGPAGuy]

That’s really refreshing to hear as there’s lots of doom and gloom surrounding this but so good there’s more positive responses , mostly on here too !! Thank you

[Katie18]

I have EGPA too and was diagnosed around 10 years ago. It is really difficult coming to terms with it psychologically & physically. I had counselling to help me through it. I’ve been on really high doses of steroids & other medication but these have gradually reduced. I lead a reasonably normal life now I work part time and have changed jobs a couple of times - but it has taken time so hopefully you will too. I’ve had to be patient, take things a step at a time & listen to my own body. Hopefully things will improve for you

[Rarity1 in reply to Katie18]

Thank you so much for your advice and experience, that will help massively, thank you x