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Thread: Churg-Strauss Syndrome Vs. Wegener's Granulomatosis

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    Default Churg-Strauss Syndrome Vs. Wegener's Granulomatosis

    Is there a huge difference between the two? Is this something looked at closely by Rheums?

    I am excited (for possible relief's sake!) and extremely nervous/stressed out for my rheumatology appointment this Friday. It seems like this is the right place for me to be, because no one has been able to truly help or figure out what is wrong with me: constant nasal inflammation and congestion along with (sometimes) crippling headaches in the back and top of my head. I'd also like to add that, now that I've been reading things and have become convinced that I have one of these disorders (not because I'm a crazy hypochondriac, because nothing else has been able to remedy or explain this crazy nasal problem for over a year now), my left eye also hurts sometimes. It started awhile ago and wasn't an issue for awhile, but is now hurting again, which interests me in regard to this. Especially because my nose is SO blocked right now.

    I have trust issues with doctors now, probably because they've seemed so dismissive and failed to diagnose me, which is something I'm not used to. I'm afraid I'll go there Friday, appear okay (better in upright position with breathing), and not be given relief, or thoroughly looked at. I don't see how that can be, because my inflammation markers are high, plus I have this ongoing, strange issue.

    Do you guys know about Churg's? Was it on the list of things to check? Is it compared when looking at everything? Is it the same thing? It seems really similar.

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    I don't know much about Churg's specifically. It is one of the vasculitides - you can consult the Vasculitis Foundation website for info on all the different kinds of vasculitis.

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    Here's probably more than you want to know about EGPA/Churgg-Strauss: Vasculitis Foundation » Eosinophilic Granulomatosis with Polyangiitis (EGPA/Churg-Strauss Syndrome)

    Neither one is any fun.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I have gotten the feeling that Churgg-Strauss, Wegener's and MPA all have some similiarities. I don't have time to look at Pete's link right now, but am sure it is informative.
    Anne, dx'ed April 2011

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    None of us on this forum are doctors or qualified to give medical advice - we can only share our experiences. The Vasculitis Foundation has some excellent information including videos of lectures about the different types of vasculitis. Possibly those resources, as well as what you've learned on the forum, could help you compile a list of questions to take with you to your rheumatology consultation.

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    Quote Originally Posted by Pete View Post
    Here's probably more than you want to know about EGPA/Churgg-Strauss: Vasculitis Foundation » Eosinophilic Granulomatosis with Polyangiitis (EGPA/Churg-Strauss Syndrome)

    Neither one is any fun.
    That was an informative link. I have some of the symptoms of EGPA. The increased heart involvement is notable, but I haven't got that, that I know of. A lot of asthma-like issues rings a bell with me.
    Anne, dx'ed April 2011

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    Like Ann said, these are all somewhat related and you can add lupus to the list as well. Some of the diseases have distinct markers, so your rheumy would probably check for those first from blood tests. Wegs is normally diagnosed by exclusion, that is, you have all these symptoms and its not this or this or that, so it must be wegs. There isn't a specific marker for wegs that they can test for, but the presence of granulomas is a pretty good tip off.

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    Quote Originally Posted by annekat View Post
    I have gotten the feeling that Churgg-Strauss, Wegener's (GPA) and MPA all have some similiarities.
    Yeah, they are all ANCA-associated vasculites. They do differ in how they way they harm us, although like MPA and GPA can both affect the kidney. The markers are different even though they are all ANCA-associated, like we use PR3 for weggies. I heard that practically 100% of the people with EGPA have astma. But yeah, tons of resources online so fairly easy to read up on the different vasculites. Was actually at a seminar yesterday where they described the differences for those three different ANCA vasculites, but can't remember all the details.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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