Hi I'm a 24 M and have been diagnosed with EGPA today after 2 weeks in hospital. Started with shortness of breath and arm pain, got bought in for a Active TB looking lung from Xray and high Esophilias in blood. Kidney health was deteriorating so idea was to put me on Steroids ASAP prior to diagnosis being confirmed. Body has responded well and will be out of hospital today. Anyone have any similar stories or any advice. I'm feeling much better with the steroids and can breath for England.
P.S: am allergic to Dust and I have had a childhood of asthma but nothing from 12 y/o onwards. The last 10 years I have been sleeping in a room with dust and small mold behind my closet which I think has risen this and cleaning this out on 04/12/2022 has started this. Be careful guys.
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s8lomon
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Hi s8lomonWas diagnosed 2010 with EGPA after second sinus operation and pumonia, bronchoscopy was done to remove excess fluid. No childhood asthma but mild late onset adult asthma. I do get joint and ligament pain (neuropathy) l take norspan for that when the pain is excessive as Prednisone would help but for better long term outcomes best to keep Prednisone as low as possible have found my immunologist vitally important in the management of my EGPA.
Have they recommend you to a specialist in this area?
Have found the information on this site extremely helpful.
They are yet to refer me due to ongoing diagnosis uncertainly. I’m back in on Monday so let’s hope there’s a plan of action. Prednisone max dose is killing me slowly.
Try and stay positive l found the initial not knowing and diagnosis the most challenging mentally and physically but with the right treatment and knowing how to treat it better life was a lot more manageable 👍
Hi, lots of useful information here and on Vasculitis UK website. I have EGPA diagnosed 2009 after 10 years of worsening asthma and fatigue. Steroids are a miracle cure to stop the decline in the first instance but there are medications for long term management. Try to see a vasculitis specialist who can treat and guide you, it’s an illness that affects people in unique ways. Good luck, and ask questions as they arise for you.
First thing I would say there is hope. I am a 56M, and I was wheeled into hospital two years ago, and now I classed as in remission, and have cycled 7000km since. Still a little was to go but on the right course - hopefully just one more infusion.
Two things about steroids; they mask the symptoms but you really need to be on immune suppressants like Rituximab, secondly they hugely increased my appetite and I put on a load of weight - beware. My consultant said the fitter you are the easier it is to bounce back, to that end I eat plenty of fruit, vegetables and fibre, and exercise when your consultant approves it.
hi - sorry to hear about your diagnosis - the painful arms part was one of the worst parts of my attack in 2021. Glad to hear you are on the mend. Definitely looks to get off steroids as soon as you can safely do so.
I agree with eh66 that getting exercise and keeping fit will help you a lot and at 24 you have no excuse 🙂.
My major turning point (to date anyway, don’t want to tempt fate) was getting onto a drug which clocks the production of eosinophils (Benralizumab). It’s not without its complications to get access as it’s an asthma drug but it’s been great for me and protected my overall immune system.
Hi reboundman read in your post that you are on benralizumab l have been on Prednisone for 15 years 5-10 mg about to start on this medication in the next month, mainly have sinus issues and joint pain (neuropathy) and asthma of course. How have you found this medication for your EGPA how long did it take to start to see benefits? Where there many side effects etc. I everyone is different 🥴Cheers
I started on benra in Dec 21 so about 4 months after I was hospitalised and diagnosed. I was already on high dose Pred and weekly methotrexate. I had already had a flare a few weeks after I started reducing Pred so was right back up to 50-60 mg. I really wanted to get off steroids asap because of the side effects and all I can say is that since I started the benra treatment I’ve stopped Pred altogether (since last summer) and plan is to stop methotrexate very soon (just awaiting results from recent blood test - if all good we stop). My neuropathy has got a lot better and I’m back mountain biking pretty much and at the level I was before the nasty attack and hospitalisation. Hope it goes well for you - where are you being treated?
Hi Solomon. All good advice below. I started on high dosages of pred..tried a bunch of other immunosuppressants (mycophenolate/Azathioprine) which made me really sick. You need to see a specialist and get all your major organs checked out for signs of inflammation. I am now on Benra and 5mg Pred and start to reduce next month. You will definitely feel the benefits of a zero Eosinophil count which the high dose pred will do for you to start with. Its a long journey to find your right balance of drugs..I can only now feel my hands and legs properly after 18 months! Good luck to you and sorry you have to join this crappy club.
Good to hear your success with Benralizumab Reboundman. I have EPGA (diagnosed Nov 2017) and was enrolled on a clinical trial in Jan 2020 testing the effectiveness of Benra v Mepolizumab. I’ve been on open label Benralizumab for about 2 years now and stopped prednisolone 18 months ago and last week stopped Methotrexate after 5 yrs .
I have had a few blips along the way but generally feel much better since being on Benralizumab and stopping Methotrexate was a welcome relief as I do suffer side effects every week. I know it’s early days yet being off it but it felt great this week not taking it.
Good luck , I know others on my trial (it’s specifically aimed at EGPA patients ) have also stopped Methotrexate as well so hopefully your latest blood results will allow you to do the same .
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