Anyone with EGPA

[Millymoop]

Hi, is there anyone with EGPA? Would be lovely to have hear from someone in the same position as me as I have to explain it to my own Dr! Thank you

[May7]

I have EGPA, but contarily to what was expected I don't have asthma. It was only diagnosed properly after having a huge number of blood tests, including looking for vasculitis and ANCA. First treatment was Prednisolone, which I am still on, and there are reasons for that. I can describe my journey more fully later if you need me to, but at the moment I am rather tired as Covid has caught up with me after avoiding it for three years. Luckily I was offered a choice of treatments, and am having Remdesivir infusions for three days running, with my second one this afternoon, leaving in an hour.

[EGPAGuy]

I also have EGPA. Happy to describe my journey if its helpful. I was diagnosed in November 2020 having suffered undiagnosed for a while before. I am being treated with Benralizumab, Pred and a bunch of other stuff to as precautionary measures.

[MIK65]

Hi, I have EGPA, diagnosed in December 2020 after many years of issues with sinusitis, nasal polyps and asthma. Came to a head due to being very ill with emerging neuropathy, joint issues as well as other symptoms . Diagnosed during two week hospitalisation through bloods and a kidney biopsy. Underwent IV infusions of antibiotics and steroids. After discharge went onto a series of cyclophosphamide infusions together with the usual batch of drugs including prednisone. Went into remission the following May and have been a Azathioprine ever since. Have residual nerve damage in my right hand and feet together with extreme fatigue, but all in all in a much better place. Hope your treatment is going well. Happy to give more detail if required.

[Rarity1]

hiya, I was diagnosed with EGPA a couple of years ago and I find everything an absolute nightmare most of the time and no one understands it. I started getting Ill in 2017 , eventually being diagnosed Xmas 2020 after pneumonia nearly ended me, spent a month in hospital and a wonderful Sikh consultant explained why I could be getting various ailments. If you want to chat more I’d love to hear from you as if you experience anything similar I’d like to hear about it.

Steve

[s8lomon in reply to Rarity1]

Hi Steve,

I am in a similar position. I hope you are doing well since this. May I ask, what was done with the liquid in your lungs from the Pneumonia.

[ElaineRH]

Hi, I have EGPA like many diagnosed after a big battle. My lungs are very damaged, small about of brain damage and lots of pain just about everywhere. Currently on rituxumab and Mycophenolate plus still lots of steroids. Never reached remission since diagnosis in 2016/17. Still a long slog but have a really good Rheumatologist who has a plan. Happy to go into much more detail about my journey too if you would like..

[Suzi70 Administrator Vasculitis UK]

there is a page on the VUK website if it helps with explaining to your doctor. It was written by doctors. vasculitis.org.uk/about-vas...

[Millymoop in reply to Suzi70]

This has been fantastic, I have it printed out and take it to any appointments I have, gave it to my Dr only a week ago. Thank you so much.

[lisat96]

I also have EGPA. I was diagnosed in 2017 after years of adult onset asthma that later became Samter's Triad (asthma, sinus polyps, aspirin allergy). I am being treated with mepolizumab and methotrexate and prednisone.

[Roughley17]

Hi, I was diagnosed with GPA in February 2020. I'd had problems with sinuses for some time, then suddenly became very ill and was hospitalised for nearly 3 weeks. Following diagnosis, I had 9 Cyclophoshamide treatments alongside 60mgs Prednisolone, Alendronic Acid and calcium supps. After the Cyclophoshamide, I was put on Azathioprine but had a really bad reaction, so was changed to Mycophenolate which I have tolerated well. I've had occasional ups and downs but have mainly been in remission since. I'm still on the Mycophenolate but my Consultant, who has been absolutely great, says I may be able to come off them, hopefully in the near future. I am now down to 2.5mgs Prednisolone which was difficult initially as I was getting aches and pains. I've had several bouts of feeling unwell recently with a sore throat and sinus congestion. My doctor has told me that when this happens to increase Prednisolone to 5mgs and stay off the Mycophenolate, until I feel better. I have days when I have little energy, but otherwise I've been able to live a pretty normal life recently, including joining the gym and taking a couple of short trips away. I'm retired though, so that helps.

Hope this info helps and that you soon get better. Good luck!