Churg Strauss Syndrome - My Story

[abbottsys]

Here's my first hand account of my fight with Churg Strauss Syndrome. Hopefully it will help others. Churg Strauss - My Story churg-strauss-syndrome.com

-Ken

[Barnclown]

Thanks very much for the link. Your way of telling your story is helping me a lot.

I have systemic lupus & my rheumatologists have been saying things like: "not vasculitis yet". But my mouth & my nasal passages have been causes of significant concern & treatment over the years, as have vascular rashes and paroxysmal heamatomas in my extremities. So, am just keeping an eyes wide open re vasculitis & chug Strauss in particular. Over the past 2.5 yrs since my lupus (re) diagnosis (turns out I was diagnosed as an infant & teen in the '50s &'60s in Philadelphia, but no one told me and when I moved to the uk in my 20s the NHS took decades to spot the underlying cause of my progressively dodgy health. Fortunately, I am responding reasonably well to treatment)

I have a couple ?s:

Have your consultants mentioned mycophenolate as a possible treatment?

Are you hypermobile? if yes, has Ehlers Danlos been mentioned in the course of your diagnosis?

[SadiaC]

This is a very interesting and useful story for anyone suffering from or with potential vasculitus. Having still not been diagnosed but having a torn tendon from a fall it caused my vasculitus. I had no pulse or blood vessels or running from my ankle to my foot. However I also had an MRA of the heart which is showing stenosis of several larger arteries and my femoral artery in my bad foot is also kinked and curved. I am waiting to a full body MRA and the rheum thinks it is Takayasu but they are not sure. I have had no steroids and just statins and blood thinners and i cannot run and have difficulty walking but have now come off crutches so that is great

[Tambo7]

Thank you for sharing your story. What a hard time you've had! I also have a Churg Strauss diagnosis and pred is a real issue but has certainly helped me feel better.

I really appreciated the anti inflammatory diet tips.did you notice a difference?

Wishing you continued wellness!

[pinktiger53]

This was a very detailed account and interesting reading - thanykou for sharing your experience. I am currently awaiting an appointment with a specialist that hopefully will go some way to getting a diagnosis after a two year battle. I hope you keep as well as possible. I found the anti inflammatory diet interesting - it is something I have been researching too.