ANCA Antibodies

[Lavender-Flowers]

Hello,

I’ve just had a blood test results that indicate positive ANCA antibodies, nuclear, and ANCA LIU Of 57. My blood report suggested the doctor should discuss systemic Vasculitis, a condition I’ve never heard of before so I’m very new to this. I also seem to have high urea and reactive c-whatever that means.

I was diagnosed as having autoimmune B12 deficiency last year and am on 3 monthly B12 injections. I’m also on a medication which has a little known side affect of causing agranulocytosis yet I do have enough antibodies to cause note.

I have loads of symptoms and had rhinitis for a couple of years after 2000. I was wondering if anyone has advice on early days or how to get GPs to be careful and thorough. I’ve frequently asked for referral for GI symptoms but it’s refused. I’m concerned that the GP will also ignore blood reports which suggests referring to rheumatology, GI.

I have a double appointment booked in mid January but am worried I’ll come back being labelled as anxious (which is true but only in that I want an accurate diagnosis and effective treatment).

[Hidden]

Hi Lavender-Flowers,

Your GP must have had some clinical suspicions otherwise they wouldn't have ran the ANCA blood test as it's not routine. Are you MPO or PR3 positive? You shouldn't have to wait till mid January for an appt to discuss the results, that's far too long to wait if you do have an ANCA associated Vasculitis

ANCA can be complex to interpret, it really needs to be done by a Consultant with experience in diagnosing and treating Vasculitis. It's possible to be ANCA positive but not have Vasculitis and ANCA negative but have an ANCA associated Vasculitis. ANCA can also cross react with other auto antibodies.

The best thing to do is phone or e mail the helpline and we can talk things through with you. Here are the details

vasculitis.org.uk/helpline

Best wishes

Lynn

[Popeye123]

Hi well I'm quite new like you diagnosed three months ago with autoimmune disease churg strauss I think as the young girl on here said everyone is different but you do need specialist treatment tell your doctor what you believe you have and book in to see a rhumotoligist asap the quicker you get treated for the proper diagnosis the better you will be good luck godbless regardspoprye

[Hidden]

I was diagnosed after pushing my GP for a hospital appointment for 4 months. When I went into hospital they thought I was less than three days off 3 days off full renal failure. GPS have no idea what this disease is and don't know how to identify it. Even in the hospital my first diagnosis was terminal lung cancer which I had to live with for 4 days before a rheumatologist came and told me I haven't got cancer. Sounds to me like they caught you early and the earlier the better good luck with it all it's a hell of a ride

[Hidden]

Many GP's seem very lacking in knowledge and awareness of Vasculitis. I was reduced to 30% kidney function before, after much pestering and complaining, my GP finally realised there was something serious going on and sent me to Hospital emergency admissions.

You have to be very persistent, GP was happy for me to wait the 8 weeks wait for hospital tests and frankly I wouldn't have survived that long.

Having said all that I agree with the comment below that if ANCA test been done they must be on to it, I wasn't ANCA tested until I'd been in hospital for 4 days during which time they did loads of other tests that came up negative.

The care from the specialists at Hull Royal Infirmary has been outstanding since my diagnosis three and a half years ago. Kidneys have recovered to 50% function, had one flare up 14 months ago which attacked my joints. Back in remission and keeping fingers crossed!

[Lavender-Flowers]

Thank-you so much for replying and for the suggestions. I think I may call the helpline in the new year.

The ANCA test was part of a set of tests because I pushed the doctor to consider other autoimmune disorders given that B12 injections alone aren’t solving all my problems. I also specifically asked for Addison’s check but it wasn’t done sadly.

But now that both January’s and December’s blood urea are over the upper limit and many other immune cells except ANCA have dropped to zero that I’m concerned. The anti gastric Parietal antibodies have also come back as zero as well having been positive before. The ANCA m and p came back 0 but so did IGa and I eat a lot of wheat products.