Churg Strauss Syndrome (EGPA)

[Ruskie]

I was diagnosed with Churg Strauss Syndrome (EGPA) in 2018, and as it is a rare condition, I have been unable to talk to anyone apart from my consultant and my sympathetic wife about how to get through each day, especially when I have a flare up of my condition. Is there anyone out there with the same diagnosis as me, that I can talk to?

[Tbrz]

Hi if you contact the vasculitis part of this forum, you will find a supportive and informative group. Also if you go to the vasculitis website again you will find help in the people who manage the site, they are excellent. Good luck to you, I have GPA and I found it hard to deal with. Take care.

[Ruskie in reply to Tbrz]

Many thanks for your advice, I will have a look at vasculitis.org.uk for some help and info in how to manage my condition better.

[Tbrz in reply to Ruskie]

Good luck, they are very helpful.

[Ruskie in reply to Tbrz]

Thanks!

[Tbrz]

vasculitis.org.uk

[whlslr55]

Hello. I do not share your condition but did help a friend with Churg Strauss a few years back. May I ask if you have been diagnosed with asthma or any breathing difficulties in which the md may have prescribed Prednisone?

[Ruskie]

Hi

I have been told i have late onset Asthma, have been prescribed Symbicort & Salbutamol inhalers as well as Montelukast & Carbocisteine Tablets / Capsules.

Have breathing exacerbations at times, difficult to climb the stairs when it is at its worst.

But touch wood not been as bad for over two weeks now.

[GrandRoc]

Hi there , I also have EGPA so understand the isolation you mention. I’ve had it for 20 years now. It gets easier to live with. Happy to chat about it. Is there something specific you wanted to discuss?

[Ruskie in reply to GrandRoc]

Hi ThereNothing specific I want to discuss thanks.

It is just so good to hear from somebody who is dealing with the same issues that a fellow EGPA sufferer has to deal with.

In my case I was initially diagnosed with COPD, and medicated for the next 3 years accordingly, as the difficulty to go about day to day life just increased. Coughing fits, lack of good sleep, a chest that whistled, constantly expressing mucus, a general feeling of malaise, and being unable to exercise like i did before.

All these combined were wearing me down, as i struggled to carry on with my full time job. EGPA was only diagnosed when i was admitted to hospital early one morning struggling to breathe at all.

It was only then after blood tests, CT scans etc: that my EGPA was diagnosed.

Am still struggling especially when i have a flare up, not complaining though just trying to get on with life.

Although on furlough at present, I start back at my full time job next month.

The biggest pain for me is the constant breathlessness, the constant mucus, and knowing it gets ten times worse when i have a flare up, coupled with the fact that during the current Covid situation, any help from my previous consultants is non existent.

So to sum it all up, to be honest i am just glad to be able to talk to someone who understands the hurdles an EGPA sufferer faces. There is certainly comfort to be had from not feeling you are struggling in isolation. Thanks for listening.

[GrandRoc in reply to Ruskie]

Between flares you should have a near normal baseline. Not sure going into detail in this forum is the best place. Happy to swap contact details & continue the discussion?

[Ruskie]

Thanks for your prompt reply.It would appear your normal baseline is much better that what i experience between flare ups.

But then i suppose not all EGPA sufferers are going to be of the same severity, or in a good place, even when breathing gets easier. When i am at my best I can even lie down to sleep rather than being propped up in bed.

But what really drags me down is the constant need to express mucus everyday and even during the night if I wake up

But i am a glass half full guy, so will soldier on, there are a lot things worse for sure.

Great to chat though, and thanks for letting me know that there is hope of better days on the horizon.

[happytulip]

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