Churg strass syndrome

[kujude]

Hi all does anyone have this as my doc thinks i might what were your initial symptoms and how was it diagnosed i have constant aching muscles clammy sweats itchy skin! I have copd late onset asthma thanx in anticipation x

[appyalison]

Very sorry, I have never heard of it. Good luck with your condition. Alison

[Chris3]

Chung Strauss is very rare. I have hypersensensitivity pneumonitis but early on they questioned CS. I had a skin biopsy. A cousin of mine was diagnosed 20 years ago with it and has been treated very successfully with steroids. He had asthma and problems with muscles if I remember correctly. ESP feet, legs.

[kujude]

Thanx x

[Sparkimoore]

Hi!

This is my first post.. I saw Churg Strauss Syndrome onMystery Diseases on Sky Discovery Channel.. It's occasionally repeated..

It was a lightbulb moment.. So many similarities to my sudden onset of severe asthma, which is so difficult to control.. (Enforced I'll Health Retirement from my much loved job at Met Office, Critical Illness payout too..) .. Together with sudden onset of severe & constant muscle pain in neck, cervical spine & shoulders, for which I have to take Morphine & Pregabalin.

My GP of 35 yrs had never seen Churg, but did vaguely recall it from medical school in 60s when 1st recognised.

It's a form of Vasculitis, with many variations. There's no difinitive test, but if you have 4 of a number of specific symptoms, it's assessed as Churg.

I'm back & forth to Southampton Hosp from Jersey, but they had earlier decided my bloods didn't support Churg.

3 years. Later, it does now.. Unbelievably, our new Respiratory Consultant is an authority on Churg, having done a presentation to 1000 docs in Canada on the subject.

I'm now on 10mg Pred, together with 1g Mycofenalate Mofetil, bd, which I'm told must NEVER be reduced. I have fortnightly bloods to check liver & kidney function as well as the eucinophil levels.. Which are the danger in Churg as they attack organs if not controlled by steroids.. As the Mycofenalate is highly toxic in itself.

Altho I have many nasty side effects, I must say, I haven't needed to use my home NEBULIZER all YEAR (apart from Sun,.. Infection starting..) having previously needed upto 12 nebs a day, just to breathe. I haven't had any emergency admissions since December either. So, altho I'm still very breathless at the slightest exertion, which they say is "de conditioning" due to very ill health since 2010, it's not Asthmatic, and I am "delicately stable".. Which is GOOD!

I suddenly became ill, out of the Blue, with a barking cough, in 2008, deteriorating down to severe uncontrolled asthma. I'm 53, never had Asthma in my life, or smoked.

Bad luck, I was told..

[hopefullygettingthere]

Unfortunately I have Churg Struss Syndrome. I have 5 of the key pointers. Cronic Asthma, sinusitis, urticaria, raised esinofrills, and vasculites.

Thursday I had my first dose of Chylophomid chimo therapy. It can only be suppressed, never cured. So a long haul for me. 😢 😧