I was diagnosed with EGPA I’m August last year - nasty experience as fellow EGPAers will know. After 6 nights in hospital we started off with lots of prednisolone (60 mg) and methotrexate but as we reduced the steroids I had two flares in the next two months and had to go back to 60mg. In November I managed to get myself referred to the EGPA specialist team at Guys & St Thomas (not a simple process as my GP is out of the GST catchment area - but thank you to Frimley Hospital for helping me with this).
At GST the specialist EGPA team is actually based in the Chest clinic so they are focused on the asthma part of EGPA and the management of eosinophil levels through MAB treatment. It may not be for everybody but my own experience has been amazing so far. No further flares, Pred down to 6 mg and my mountain biking level pretty much back to where it was pre August.
Just thought that I should share this experience. Wishing everyone the very best - keep positive!
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Reboundman
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So glad things have improved for you. I have GPA & took 6 months to get referred which by then I had kidney involvement. I couldnt even lift myself off a chair before diagnosis. I was referred to Barts & started 60mg pred & rutuximab infusions. Went straight into remission now down to 5mg prep & now back to 2 fitness classes.
Hi - just to clarify when it came to the referral it was on my initiative. Frimley helped once I asked a the GP route wasn’t allowed by ‘the system’. Computer says no !!
My GP said something similar at first as my borough is technically not GST “catchment” so they didn’t have the option or “the right form” on the “system”. However, unless you need inpatient treatment they can make the referral under your right to choose (see nhs.uk/nhs-services/hospita.... ANCA vasculitis is a rare disease and it is clearly beneficial for all involved (you, the medical team and research opportunities) if you are seen by specialists and have MDT input so it would be unlikely for your CCG to reject the request unless you happen to already have another vasculitis centre in your immediate area. My GP had to get the form from the Guy’s website and flag it to their practice manager so it did involve a bit more work for them, but it went through fine, just had be persistent and point out the common sense argument for the referral!
Yes the message is you have to be persistent and get clear on the route required. For me anyway it has been well worth the investment in time emailing and phoning around. I think the targeted MAB therapies (Benralizumab, Mepolizumab) seem very encouraging so far.
Hi,Glad to hear such positive news - it sounds like your treatment is working well for you .
I was also diagnosed with likely EGPA last March at Frimley Hospital after spending 10 days there. I was initially started on 40 mg prednisolone with mycophenolate added a few weeks later. After prednisolone being gradually reduced to 5mg , by Dec I began feeling unwell again which resulted in the dose being increased - I am now on 7 mg and awaiting an appointment with the consultant in July for the next action plan.
I hope you don’t mind me asking but was it because you wanted to see a specialist EGPA consultant that you asked to be transferred to GST?
Hi - apologies I just saw this question. Yes, I had heard about David Jackson at GST and specifically requested transfer there. Well worth it so far - they have been really good, not only Dr Jackson but also the whole team there.
Yes I wanted to see a specialist and was also interested in the specific eosinophil targeting therapies (I have been on Benralizumab at GST.). I can recommend.
Thank you ! My eosinophil count was back to not far from the normal range when I had my blood test this month but it’s at times when I’m not feeling so well that I wonder if I should ask to be referred to a specialist centre. Many thanks for sharing your experience and wishing you all the best
That is fantastic news that you are doing so well so quickly! a mix of Prednisone, Rituximab, and Azathioprine keep me in remission, but my strength is mostly lost from diagnosis 6 years ago. I used to mountain bike once or twice a week. Now I've had to mostly give up my favorite activity except for rare occasions on the easiest trails ☹️ You stay strong and keep moving!
Hi - thanks for your reply. I’m really sorry to hear about the bike (or lack of it). I got back in my bike two days after I came out of hospital. The neuropathy meant could hardly pedal and couldn’t stand up which as you will know is a bit of a challenge on a mountainbike! Luckily a lot of the nerve damage seems to have healed and I feel so fortunate that I’ve been able to get get to a decent level but also not taking anything for granted. I know another attack could happen at anytime so I’m very happy I seem to have found a treatment that works for now at least. What is stopping you from riding - is it the nerve damage ?
Hi, I'm new here and i'm awaiting test results for egpa through my rheumatologist who suspects this is the cause of my issues. Anyway, I saw your post about biking and could relate... I wanted to say that adding an electric kit to my bike has really allowed me to get out and about still and have some fun even though I don't have much stamina at the moment. Just thought that was an option worth mentioning to you. Best of luck.
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