LABORATORY RESULTS VARY BY LAB

[Christophene47]

My new rheumatologist was skeptical why I would be C-ANCA /PR3 positive without any other inflammatory markers. He had his blood drawing technician make a blood smear on slides which were sent to different labs. As I understand it these slides are prepared for human microscopists to read. The results came back ANCA /PR3 negative in all instances.

I am ANCA NEGATIVE; OFF Methotrex and will be tapering down Prednisone next week from 8 mg by 2mg. every 3 weeks.

It leaves me wondering if original testing was wrong and the last 20 months of tests, scans, office visits were completely unnecessary.

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Were you ill?

[Canygirl61]

I’ve been c-Anca positive for just over a year. In April I tested negative, then in June positive again (at the time, I felt like I was relapsing, hence re-testing ANCA). I believe you can test negative, yet still have vasculitis. Are you located in the US? (I’ve forgotten.) If so, you might consider seeing Dr Robert Spiera in NYC; he is very good. His father, recently retired, pioneered PMR research. Robert Spiera ran clinical trials for Rituxan for Wegeners (GPA). I hope you find answers.

[Christophene47 in reply to Canygirl61]

Thank you for the name of the doctor in NYC. I am in the US. There is still so much for the medical community to learn about vasculitis and the significance of blood test results, especially when the results are at very low titre.

Hopefully, I am on the mend. I am feeling much better than I was for the last 20 months. I have been quite active and getting things accomplished.

I am now on 6 mg. Prednisone/day; I have not felt any different going from 8 to 6mg. I hope it continues like that and there never was any evidence of lung or kidney involvement in my case. Still have aches and pains from a severe scoliosis of my spine; those are sensations I am familiar with over many years. What I experienced 20-21 months ago that took me to a rheumatologist was very different.

Thanks for your interest.