C-ANCA LEVEL AT 16 - high/low?

[Yvonnea]

Hi all,

Went through many past posts on C-Anca levels. And I am left none the wiser.:unsure: I know too that the measurements vary from country to country.

I always have a positive result. They say about 5. But latest result is 16.

I am travelling on a long haul flight this Sunday, so to hear it has been elevated has got me very worried.
Will be taking a CT of lungs later today to put all the pieces together. But generally feeling physically well.

So is 16, particularly high or is it moderate?

Any insight would be appreciated.

Thanking you.
Yvonne

[MaxD]

Yvonne,

Is that the PR3 measurement for ANCA? If so, there are two different scales. When I was first diagnosed, normal range was 0-20 and mine was 149. After my insurance changed to a new lab, the new normal range is <1 or more than 1.

Also, to make it more complicated, this number alone is not a reliable indicator of disease activity. Doctors place more importance on how you present clinically - if you are feeling well and do not notice any changes over time, that is a good sign. Hopefully the lung scan will be clear and alleviate your anxiety which is all too familiar!

Good luck, have a safe flight and enjoy your travels!

[Pete]

I'll reiterate what Max said. C-ANCA has not proved to be a reliable indicator of disease activity. If you feel good, do what you can. The long-haul flight shouldn't be a problem as long as you take a few precautions.

When my wife and I go to Europe in a couple months, I'll do the following: Put a dab of neosporin in each nostril, wear a disposable surgical mask, stay hydrated, use hand sanitizer, and take a walk around the cabin from time to time. I may look odd, but I probably won't know anybody on the plane.

[Yvonnea]

Thank you Pete & Max. Just got the CT results back from sinus/lung/Ear and all clear!!!
Doc said exactly what you both said. Can't trust the C-ANCA on it's own.
So I am off on my trip and so relieved.