P ANCA positive meaning?

[Nanaedake]

Can any knowledgeable people tell me what it means to be P ANCA positive but no specificity and no vasculitis at presentation?

[Ayesha1]

Yes, that’s me. I’ve been sick for 12 years. I got sick four months after having my second child. I had many symptoms of Churg Strauss and was rushed into hospital about 18 months of being unwell and surgeons took biopsies from sinus, upper leg and lower leg after positive P-Anca. All they found was non-specific inflammation. I continued to get sicker and rheumatologist said I had lupus like with lymphocytic vasculitis being diagnosed four years later. I’ve had spontaneous carotid artery dissection with mini stroke about three years ago. Still very sick at stages but no closer to getting a diagnosis. What are your symptoms?

[Nanaedake in reply to Ayesha1]

Mainly symptoms of joint, muscle pain especially shoulders, elbows, hips legs. finger, hand arthritis and foot pain. And other symptoms from time to time. I seem to get tired a lot quicker than other people my age. Kidney function not as good as it was. Could be some other reason though? Rheumatoid arthritis ruled out.

[Ayesha1 in reply to Nanaedake]

It is very frustrating process. I hope you get some answers and you don’t end up like me with no concrete answers 12 years on. I have full on joint pain which I have to have steroid injections every two months. Last visit I had both shoulders, both knees and right ankle injected which helps. Good luck and I hope you get some answers soon 😊

[Chris-Bromsgrove]

Hi, ANCA is an antibody (Anti-Neutrophil Cytoplasmic Antibody) which is usually present in the blood when you develop certain types of vasculitis (MPA, GPA, EGPA). However it can appear in the blood for other reasons, so the presence of ANCA alone can not lead to a vasculitis diagnosis; you would need to present with certain symptoms and usually a biopsy is taken from the affected organ. Chris

[Nanaedake in reply to Chris-Bromsgrove]

I see, so if I understand correctly then unspecified P ANCA is an unknown autoimmunity? Or, in other words, the particular function in the neutrophil cytoplasm which is under attack is unknown? Is that right?

Is there a way to find out which organ is under attack apart from symptoms?

Is there anything a person can do to remove or reduce antibody activity or attacks in this situation like diet and lifestyle factors?

if you don't know which part of the neutrophil is being attacked and symptoms are evolving or changing then how and when is a biopsy done?

[Chris-Bromsgrove in reply to Nanaedake]

I have no medical training, so I can only tell it as I understand it. P-ANCA is just an antibody which can under certain conditions cause the immune system to attack you instead 'germs' etc. The neutrophil is a white blood cell (part of the immune system) and it is actually this that does the attacking when it is activated by the ANCA antibody. ANCA can be present in the blood stream without you having Vasculitis but it could mean your at risk of developing Vasculitis at some point in the future. Vasculitis presents with vary varied symptoms and there may be one or more organs or parts of the body under autoimmune attack.

Vasculitis (and other autoimmune diseases) are treated treated by suppressing the immune system with drugs, the same way that transplant patients are treated to stop organ rejection. However until it is possible to get a diagnosis I think it is unlikely you would be given this sort of treatment.

[Nanaedake in reply to Chris-Bromsgrove]

OK, thank you. How do I get a diagnosis? I've been referred to rheumatology for other reasons. I didn't know I had P ANCA antibodies as only saw results recently. Not sure if I should follow up with GP before the rheumatology apt.

[Chris-Bromsgrove in reply to Nanaedake]

If you or your doctor suspects Vasculitis then you need to ask to be referred to a specialist centre for Vasculitis. That would hopefully either rule it in or rule it out. The Vasculitis UK helpline may be able to provide more advice on where to go.

[Nanaedake in reply to Chris-Bromsgrove]

Thanks for all this information.

[John_Mills Volunteer]

This page from the VUK website maybe helpful to you vasculitis.org.uk/about-vas...