Hi Sue
The blood tests are just indicators to help the physician, either with the diagnosis or with future treatment. You can be ANCA positive or ANCA negative and still have vasculitis. The definitive test for saying whether vasculitis is or isn't present is a biopsy of the affected area. Then when all that is to hand ALL the test results, the examination of the patient and what the patient is saying is taken into account.

The simple answer is that there isn't a simple answer.

If you go to the Trust's website www.vasculitis.org.uk and click on the Route Map you will find, on pages 14 to 17 all about Vasculitis Basics. At the bottom of page 16 there is a section on Diagnosing Vasculitis. Also in the Route Map you will find details about blood tests these start on page 67.

Hope that helps.
PatriciaAnn

Thanks for that. But l guess what l would like to know from the people on this board is what were your blood test results? Did you have ANCA tested? If so, what did it show?


Sue

John's ANCA has always been positive and relatively high even when he is feeling well. John's consultant also has a patient who has always been ANCA negative since day one of being diagnosed, even when having a severe relapse, she has had WG for about 20 years. As Pat says having a biopsy from the affected area is the definite way of diagnosing vasculitis but even then it can be difficult if the biopsy is taken from the wrong place!

Hi again Sue

My ANCA when I first presented was positive, then it was negative. It was the biopsy which confirmed Wegener's. That often happens with the ANCA ressults and to add to the difficulty of understanding you can get a false positive or a false negative result. I have been mostly negative for the past few years. Even when I flared badly four years ago my ANCA remained negative, but I was flaring and I was ill. That is why it is essential that the physician treats the patient as a whole and not the symptoms and not the test results.
PatriciaAnn

Anti-neutrophil cytoplasmic antibodies (ANCA) is characteristic of vasculitis disease and should always be investigated by a clinician who suspects a patient has such a condition. However, as has been expressed above, it may or may not give a positive result and there may or may not be apparent disease activity when positive and vice versa. That said, in the majority of cases an ANCA measurement well above the negative range will most likely indicate active disease.

The ANCA test has recently been refined and the range of what is regarded positive has changed. Under the 'old' test the Proteinase 3 antibody (PR3) negative range was 0-7 with anything above regarded as positive. The newer PR3s test has a normal (negative) range of just 0-3.

When considered with other biochemical markers (e.g. C Reactive Protein - CRP, which is used as an indicator of an inflammatory process and other symptomatic expressions, then a diagnosis is often reached. Once that diagnosis is confirmed, the same markers may well prove invaluable as a benchmark and as an indicator of how well the disease is responding to treatment.

In terms of 'numbers' my C-ANCA is now less than 0.1, I have a normal CRP, ESR and all other blood markers are normal yet I'm exhibiting vasculitis symptoms but with no apparent sign of active disease. The only marker which is slightly below range is my immunoglobulins, specifically my IgG which is 5.56 (normal range 5.8 - 15.4). For me it is only significant in that if it falls further there may be a reluctance to be given further Rituximab.

As you've probably already gathered the vasculitides have extremely variable symptoms, expression and degree of activity which in turn means treatment is often tailored and refined over time for each specific patient. This means there is certainly no text book solution or 'standard' treatment. From my own personal experience, as an atypical patient when it comes to correlation between markers and activity, my treatment has had to become 'tuned' accordance with how I react to the relevant drug regime.

Healthy wishes.

Hi.
I have had WG for 13 years and have always been ANCA negative. I have read this is very common if the WG is confined to just the nasal / sinus area.

Wishing you well Sue and hoping you get a diagnosis quickly.

Jill

thanks heaps all of you for your answers.
I am a bit confused. First of all what do you mean by ANCA?
What l was trying to consider in the difference diagnosis for different diseases in accordance with P-anca and C-ancer, also in relation to MPO and PR3.

Just curious to know the ones who tested positive for P or C Anca, did you also test positive for MPO Or PR3? do they normally go hand in hand? The only reason l am asking, specialist seems to think with only P-Anca, isn't enough to say l have vasculitis. He said other blood work would also show up abnormal, and apart from my ACE levels everything else is normal. Apart from my haemoglobin, which has been on the lowish side all of my life.

Having a biopsy would be great if only they knew where to biopsy from.
My symptoms are pretty vague and they wouldn't even know where to start with me. Initially they were going to take it from the skin, but the doctor said he didn't think it would show anything. As l just got bitten by sand flies and it was hard to know if it was anything that could help in the diagnosis. He then said, he would take a sample of my stools for Amyloids. But he also doesn't think l have that, as my tongue is very normal looking. Sarcoidosis it could very well be, but that also will need a biopsy. I just want to get diagnosed, l am sick of waiting.


My symptoms:
floaty fleeing
walking on cotton wool
forgetfull
fuzzy thinking
buzzing in head
left ear cartilage sore
lately, arm feeling numb during sleep at times
shaky
no appetite
sore knuckle and ankles
muscle twitches
red eyes
heavy eyelids
numbness in left toes
burning hands and feet and kind of buzzing in legs, which have now gone, as a result l have been diagnosed as having Sensory Polyneuropathy.


All of these symptoms come and go. The worst out of all these is the floaty feeling. Like l am disconnected to the world, like l am not really present. This gets me so down and l get so depressed and anxious and cry all the time.
It usually lasts for 3 weeks at a time,and then l go be back to normal for months. Thankfully l haven't had this floaty feeling since Aug last year, but other symptoms have come around to bother me. Anything but the floaty feelings l can handle. I actually thought l was going mad. Having the Neuro say it was just anxiety made me feel very frustrated.

I feel great at the moment, but l know how quickly that can change. Since taking my turmeric pills l feel so much better, no more painful fingers or ankle or back. Yeah!

Had X-ray of chest and spine. Had ultra sound of pelvis and upper tummy,and had an MRI of brain in Dec, and all came back normal.

Thanks of reading and taking the time to answer my questions. Your help is greatly appreciated, and its nice to have somewhere to express yourself.

Sue

Hi Sue

c-ANCA and p-ANCA are BOTH signs of vasculitis. c-ANCA is more commonly found in patients with WG and p-ANCA more commonly found in Microscopic polyangiitis. although either can be found in both diseases. In Churg Strauss Syndrome patients may have p-ANCA, c-ANCA or no ANCA at all. This is information from Birminghan University Hospital and mentioned in the Route Map for Vasculitis page 67. Hope that helps.
PatriciaAnn

Hi Sue, I had every single one of those symptoms but had constant blocked nose to. I was told I was a hypercondriac and stop wasting drs time !!! Year later I was very very ill with a diagnosis of WG !!! Don't give up until you are happy with ur diagnosis.
I wish you well.

Thanks, l won't give up. I don't have a blocked nose, so l don't think l have WG and my chest x ray is clear. I think l may have Leukocytociastic vasculitis.

The specialist said to me if l had vasculitis l would be very sick. But l asked what people in the early stages? He didn't know what to say. Does vas, start gradually or does it progress usually over a few months or days?

Thanks sue

Thanks, l won't give up. I don't have a blocked nose, so l don't think l have WG and my chest x ray is clear. I think l may have Leukocytociastic vasculitis.

The specialist said to me if l had vasculitis l would be very sick. But l asked what people in the early stages? He didn't know what to say. Does vas, start gradually or does it progress usually over a few months or days?

Thanks sue