Vasculitis

[torfruda]

Can you have vasculitis and have negative blood tests

[PMRpro]

Depends on the vasculitis - in polymyalgia rheumatica and giant cell arteritis up to 1 in 5 patients have blood markers that remain in "normal range". That doesn't mean they aren't raised for them, just not high in comparison to 95% of the healthy population which is what "normal range" is based on.

[torfruda in reply to PMRpro]

Thank you I think I have Churgh Strauss

[PMRpro in reply to torfruda]

Not sure about that - would have to read it up.

[Sevenstar in reply to torfruda]

I have that too , newly diagnosed and a bit scared 😟

[vivdunstan Volunteer]

Primary cerebral or central nervous system vasculitis in the brain usually has negative blood tests early on. In my case I only showed raised inflammation markers after a huge relapse 10 years into my disease. But even after then the medics went on my symptoms as the most reliable guide because bloods could be misleading.

Some forms of vasculitis are particularly difficult to diagnose without reliable bloods. Mine is a particularly difficult form. I was ill from 1994 but initially misdiagnosed until I fought for new tests in 1997. Which were still not conclusive, but indicated the likely diagnosis.

[vivdunstan Volunteer]

If you have questions about diagnosis the Vasculitis UK helpline can offer good advice. You can find their contact details at vasculitis.org.uk/helpline

[vivdunstan Volunteer]

And for more information about Churg Strauss in particular you may find the Vasculitis UK charity page about it helpful vasculitis.org.uk/about-vas...

[Chris-Bromsgrove]

Churg Straus is now known by a mouthful of a name - Eosinophilic Granulomatosis with Polyangiitis (EGPA). When you say negative blood tests, I'm not sure what particular blood markers you are referring to? PMRpro is referring to the inflammatory markers which you would expect to be raised. For EGPA there is also likely to be a higher than normal amount of eosinophils (a type of white blood cell) and also possibly presence of the rogue antibody ANCA. Are you saying these have also come back negative?