Weakly positive ANCA

Hello new to this, been unwell for past few years doc always puts down to fibromyalgia,last few months felt awful hot all the time,severe joint pain,spots and rashes constant skin infections,stomach pain ongoing cough for 18 months.sorry to waffle.saw rheumatology who was concerned with cough and just received a copy of a letter that I was cc into between rheumatology and respitory advising weakly positive for ANCA,I work with health visitors who for along time said they suspect there is some thing with my immune system,any help would be appreciated as not getting anywhere with gp

[John_Mills Volunteer]

Have you tried contacting the VUK helpline by email.. this is the link we will try and help with advice if we can ... would really need to know more detail than you have written above. vasculitis.org.uk/helpline

John

[Alliand]

If you are positive for ANCA, don't feel well, with cough and stomach pain, I doubt it matters medically how weak or strong the ANCA result is; there is much said that the titre of ANCA is not a good measure of disease activity. Your blood vessels are likely under attack by your immune system;ie. vasculitis; inflammation of blood vessels which can affect any part of the body.

The presence of an ANCA antibody means something; ie. Your vascular system is being attacked by your own immune system and you should eventually be seen by a rheumatologist and be started on a trial of prednisone to see if it helps you. Prednisone works in 2-3 days; if it helps dramatically, it will be a clue to your doctor and to you too that an inflammatory disease is at play.

If I were you, I would insist on a trial of prednisone; your primary care doctor should be able to help with that much, and refer you appropriately after you can report your reaction.

I started with a weak C-ANCA and severe upper body joint and muscle pain. Prednisone worked like magic at first in calming inflammation. I am still am on prednisone and another anti-inflammatory .

But do start by demanding a trial course of prednisone. Your reaction to it can be very telling. Good luck; if you have a say, go with rheumatology first. But even your primary care can give you a trial course of prednisone to start.

Best of luck and be assertive! Good luck and all the best.

[Chris-Bromsgrove]

Hi. I suspect your doctor will be reluctant to put you on prednisone without a diagnosis. Whilst it will undoubtedly bring some relief it is going to mask the symptoms, making diagnosis difficult. If it is one of the ANCA associated types of Vasculitis you have then you are going to need more than prednisone to put it into remission.

[Alliand in reply to Chris-Bromsgrove]

Actuallly, here in the US, if PMR is suspected based on symptoms, doctors do give a trial of Prednisone before further diagnostics for fear of pt. having a vascular event in the meantime from GCA or as yet undiagnosed vasculitis. The trial is 2 weeks . But even a weak ANCA showing, shows the antibody is there.

[Chris-Bromsgrove]

Hi Alliand. From a patient perspective that is great. My first infusion of methyl prednisolone had a profound effect. After 24 hours I no longer needed pain killers. I had a positive ANCA reading but they would not start any treatment until a confirmed diagnosis from a biopsy. If PMR is suspected then it might be different. However I didn't think ANCA is usually associated with PMR. I do hope you get things sorted as I know how awful it is being stuck in limbo without a diagnosis. Chris.