i think this sort of question has been asked before but I would love to know exactly what is meant by my ANCA results.
At worst, during a bad flare, my P ANCA was at 45 (1 year ago), at best 5 (6 weeks ago) when my consultant said I was ANCA negative and I was feeling great. Now it is 22 with no other signs of inflammation in my blood results. Kidneys doing ok, too. I am feeling reasonably ok though experiencing increased neuropathy of the legs and feet, tinnitus and fatigue. Don't know whether this is the end of a mini flare or the beginning of something worse.
Does anyone know the scale of ANCA results? At what level should we start worrying, if at all?
Ayla
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It depends which test they are using at your hospital as the older style test (PR3) was anything less than 7 was -ve but under the new PR3s test the threshold is just 3.
However, in reality there's no simple answer as patients can have a high ANCA +ve score and have no apparent disease activity and vice versa. In your case I'd suggest the fact there has been a change is significant and you are experiencing disease-like symptoms which should be investigated further. I'd ask for a further test and see if the value has changed.
Thank you, Martin. You seem to know a lot about this! I don't think my consultant would be willing to perform another ANCA test within the next few weeks, he seems to prefer to allow a time gap of about 3 months between tests for ANCA, not sure why.
What other investigations were you thinking of? It seems that all that I know of has already been done.
Ayla
Hi Ayla.
I'm by no means an expert but have learnt quite a bit over the past 5+ years and to be honest, it's my way of dealing with the disease. Having a science background helps plus I feel, in part, 'in control' if I'm informed which in turn allows me to question the consultant as I've also learnt is that the doctor isn't always right!
I have my blood tests performed every 2 months (David Jayne's advice at Addenbrookes) and every two or three weeks if I think I may be flaring. I have all the regular tests plus C-ANCA and Immunoglobulin levels checked. No one test will necessarily reveal activity but collectively, especially if there has been a change in the trend, they may indicate something's going on.
I get Rituximab as an annual maintenance dose and in the past Addenbrooke's have not bothered to check for depletion of B-cells but as I'm far from okay at the moment but with absolutely no signs from two MRI scans,in blood tests or indeed from a lumbar puncture. On this occasion 5 months after my infusion my B-cells have also come back as negative but David Jayne revealed that he's seen active B-cells (there are two types of cell) in tissue biopsies which once again highlights how this damned disease is so enigmatic.
If I were you, I'd certainly have my bloods done to give you an indicator as to which way the activity may be moving. I'm sure others here will also suggest that you are the best person who knows what's going on. How you feel is a crucial diagnostic tool and the symptoms you describe sound worthy of immediate investigation.
Good morning. Apologies in advance of my direct approach but I read one of your replies to another user and noticed you have C ANCA. I too have recently tested positive for this and searching everywhere possible to get enough info to understand more about it. I’m hoping you could offer up any advice or point me in the right direction for further advice. I’ve literally been diabetes past few months. Had bloods, screenings, imagining and due a biopsy of nasal and kidney as the rheumatologist appears unable to locate a primary area. All of which doesn’t make that much sense and has truly become a bit overwhelming. I’m currently on my first steroids having had pain relief and antibiotics. Best regards. BB
John's is always ANCA + around 29, never been any lower in 11 years and he feels ok, it has been much higher when he was not well ... 29 seems "normal" for him but it might not for someone else... John has Urea and Electrolytes (U&E), liver function and kidney blood tests every 12 weeks. Full blood count, and ESR every 4 weeks.
Thank you, both! Useful information and advice which I appreciate.
It would be interesting to learn from others using this site how often they have standard blood tests. I was a little taken aback at my consultant's recent willingness to let me go almost 6 months without any blood tests at all.
I am three months into my initial treatment after been diagnosed with MPA. I’m feeling a lot better (no vasculitis symptoms other than some bouts of tiredness) yet my ANCA results (PR3) are still showing sky high (greater than 100). My consultant was expecting to see PR3 readings below 100 at this stage in the treatment but he did indicate there are cases of the disease going into remission with ANCA readings still in excess of 100. I hope I’m not going to be one of those cases but it does seem to show that everyone is different in terms of what is a high level and what is normal for them.
It is good to hear from you, Chris, especially as you are a fellow MPA sufferer!
I am glad to hear that you are feeling better and that you are happy with your medical care.
I am wondering - does your experience indicate that the ANCA test is almost useless in diagnosing the current state of play with the disease? Perhaps it is not the number indicator of the level of ANCA that we should worry about (normal seems to be different for everyone) but, can I ask the group, does an increase in ANCA levels always show disease activity and a reduction an improvement?
Everybody seems to be saying that ANCA tests mean nothing. Then l would ask them, what is the point of doing them n the first place? I guess an answer would be, that the symptoms would be greater benefit in the diagnosis than the blood test alone. So a combination of of both would be the best diagnosis, and that the blood test result is just a confirmation of disease activity. But what really confuses me is that, l feel perfectly fine at times and then l feel tired at times, hot hands at night and thats a far as my symptoms go. I have a positive P- ANCA of 167, it was 650. I live in Australia, so l am not sure what that equates to for the US?
But the reason for a big difference in results l believe is that, l had them done at different labs. The tests were done 3 weeks apart. It's amazing ow different the results can be from different labs.
All of my blood test results are normal, except the p- ANCA. MPO and pr3 are also normal and all my inflammation markers are all normal.
Why my p- ANCA alone is not normal l am not sure and just can't seem to find out what it could be as my symptoms are vague. I don't have Lupus, RA. Kidney, liver, lung or any other organ problems, so what can l have?
Still desperately waiting to be diagnosed. Nobody seems to know what's going on and doctors don't seem too concerned as they don't think l have Vascuiltis as they say l would be getting progressive worse, and l wouldn't be feeling better at all. They say people with vas, are vey sick and couldn't live each day like l do. They are not saying l don't have it, they just don't think my symptoms are presenting themselves as vas. So l still do strongly believe that blood tests don't lie and if they show abnormal results there is something going on within the body. We really need something to go on how you feel and blood tests are the best way l think to monitor disease activity. In a way as much as l feel for you guys as having this disease is awful, but for me it's awful as l don't know what my body is doing. Even though l feel great the the moment l am not sure how long this will last. The only thing l have changed is l have kept out of the sun for 2 months and have taken some special vitamins. I live in a sunny climate so its been so hard to stay out of the sun, but l am going back out for a couple of weeks, to see if l feel tired again.
Am the same p, anca positive but other negative but very bad swelling to shoulders and spine and legs knees feet waitibg on going back rheumatologist. Been told have severe Fibromyalgla.
I sense how frustrating your lack of diagnosis is and hope that is very soon resolved. By the way, I am in the UK , as I think most of us on this site are.
I think you have said a lot that illustrates the difficulty in tying an ANCA level with disease activity and can see that it is just a part of the picture. That must be why my consultant was asking me if I had other vasculitis symptoms above and beyond the fatigue, tinnitus and peripheral neuropathy. The answer, in my case, was no. I see also the difference in different lab results - all double dutch to me (how do you compare 1:640 to 22?)
With regard to your symptoms and your doctor's remarks. Just to say that I have yo yo-ed between feeling grim and feeling almost normal for all the 9 years I have had vasculitis. Sometimes this change happens on a day by day basis but is is usually noticeable over several weeks or months. It doesn't seem to have any rules of progression, at least for me. It seems only marginally linked with medication. It was only when my kidneys become involved that I am aware of a steady decline in how I feel. This has happened 3 times in the last 4 years. Perhaps this decline is what your consultant is thinking about?
Thank you for replying and I hope things work out well for you.
As I understand from my consultant ANCA can range normally anywhere between 25 and 200, which seems to support the variations between vasculitis suffers. Apparently, after having 'flu symptoms' for a week and presenting with ever more painful muscle/nerve symptoms with increasing pain relief for a further two weeks then the 999 call, blood tests showed my count was over 2000. My consultant said, had I not kept myself fit and healthy, another week would have been a very different senario.
Incidentally, prior to the 'flu' I went deaf for a week (antibiotics prescribed) and for the six weeks before going deaf I had symptoms of a 'urine' infection (tests were clear). With muscle wastage and nerve/muscle spasms I have a constant pins & needles feeling in hands and feet (only way I can describe it), which increases in intensity throughout the day. I only take enough pregabilin to calm it but not to ease it completely. This feeling is a constant reminder of my CSS which, in my own mind, is a controlling factor and, should it's character change, may indicate something untoward or for the better (ever the optimist).
Apologies for digressing from the main point, just felt like I needed to.
Ayla,how long did it take for your kidneys got involved? Was it from the start of your Vasculitis symptoms and/or diagnosis? My kidneys are stil fine, so maybe l have the early stages of vas. Also, did your ringing ears persist all day long or intermitted ? PN is what l have been diagnosed with, how did your PN present itself throughout the course of you illness?
Sorry forgot to ask, in regards to your blood test, was it only the p-ANCA that was positive? What about MPO or pr3? What about any other abnormal blood results? I know the blood test only tells part of the picture, but when symptoms are so vague every bit of information is helpful. Sorry for all these questions, l hope you don't mind answering them. All of my blood tests were all normal showing no signs of inflammation or immune problems in the body.
I was diagnosed with vasculitis in July 2003. I had extreme tiredness, large, painful mouth ulcers by the dozen, red eyes and painful lumps on my finger joints. I also felt very ill. Behcets was suspected but later ruled out and MPA confirmed. I did not have kidney involvement at that stage, nor detectable blood or protein in the urine. I was diagnosed by a rheumatologist in York who put me on prednisolone 30mg daily. This was reduced fairly quickly to a maintenance dose of 5mg daily. I continued to have regular periods of feeling ill, red eyes, mouth ulcers and painful lumps on my scalp, elbows and the soles of my feet.
I saw blood in the urine first in 2007. It cleared within 48 hours with no treatment, though from before this date (probably a year before?) I had blood recorded in the urine, and protein. I was hospitalised for a week in November 2008 with suspected kidney stones as I could again see blood in the urine. Unfortunately, the doctors never linked this kidney inflammation with my vasculitis (they insisted I had a suspected kidney stone) and it wasn't treated. It eventually cleared on its own.
Visible blood in the urine returned in February 2011, after I was weaned off steroids, and it was treated with the standard hit it hard vasculitis treatment, ie. Cyclophosphamide and high dose steroids. This has saved my kidneys and brought control to the situation, though I am left with Stage 3 kidney failure.
I do not have access to my recent blood results for MPO or PR3. I do not get told anything about P Anca levels unless I ask either! I do note that my MPO was 23 in August 2011 and the P Anca level is written as positive but no level given. My other blood results are fine, at present, except for low potassium and low Vit D.
I hope this helps. Get back to me if I can help with more info.
Sue, forgot to say, ringing in the ears is only detectable, for me, when I am in a flare. Other times, all is clear. It is a good signal that things aren't quite right for me.
when I first developed ance positive vasculitis it was over 200 now 4 year later it was down to 47 and this month 27, but at first it was anca readings all the way, now it is treat the patient and dont worry about the anca
Thanks so much Ayla for answering my questions. Sounds like a long procedure to get diagnosed. In 2003 how did they actually diagnose you with MPA? Did they take a biopsy?
Not sure if MPO being 23 actually means anything, it's sound like it means it was also positive as mine is all clear. One of my blood tests last year showed low potassium, but now back to normal. Is this what can happen in vasculitis? I don,t have any lumps anywhere, but do have ringing in the ears here and there. Feel tired on and off, but still run each day and do all my normal everyday things. It sound like you were not able to to even that. That's why the doctors don't think l have Vas, as my energy levels are still okay. But who knows, time will tell. Having a positive p-ANCA can mean all kinds of things, so still trying to put my finger on it. When l look down the lists of all the autoimmune and vasculitis there are, none of them sound like me. The last thing l was looking at was possible haemolytic anaemia, as my heamoglobin has always been on the low side, and they have found l have kind of like heamoglobin myopathy, just wonder if it's linked with anything. Hopefully will find out soon.
I am very very scared. I just don't know if l could cope at all if they found out l had vasculitis.
Hi Shezian my 10 year old has just been diagnosed with vasculitis just undergoing test now to see how advanced it is. She had a stroke last year (aged 9) vasculitis was only diagnosed 9months after her stroke. She has none of the symptoms described on here. Found out by MRI scan showing changes. She was also diagnosed with ADHAD after her stroke. She apparently isn't your typical patient with vasculitis having no signs or symptoms prior to her been diagnosed or after. We don't know what will happen in the future with her and probably won't find out anything for a while.
So keep pestering your doctors for answers because there are always exceptions to the rules.
Yes, to your question, a skin biopsy was taken from an inflamed scratch when I was first diagnosed in 2003 but it returned inconclusive results (ie. a range of possible conditions was mentioned).
I think a high P Anca can indicate a few different diseases. Please don't panic. It may turn out to be less scary than you think. Don't, whatever you do, presume the worst. Certainly a good diet, a decent amount of exercise, keeping stress levels down, etc. will all help you stay fit, whatever the final diagnosis. If it does turn out to be vasculitis, then the therapies will control it. Your life will still be good!
Message me privately, if you like, and we can continue this conversation with more detail.
So I've had Wegener's since 2010 and had it completely under control (drug free for the last year) until I got a nasty flu end of Feb that awoke the beast. ANCA has never been one of the things I looked at as the ESR, CRP and my liver functions (yes I have liver involvement) have been very accurate as markers. I just got an P-ANCA test and it's crazy, so I went on line to check what the normal range is. I stumbled on this post because it seemed like it would answer a simple question - what is the normal range for an ANCA test? Apparently this is not a simple question. So upon reading the previous responses, there is something quite off with my ANCA since mine came back 1, 400 or thereabouts... my doc told me that in my previous flare - 2012, it was at 500 and something. It's a good news - bad news kind of result because it shows that (along with my other markers and how I feel) THE BEAST IS BACK, ha ha, but it also means that getting treatment will happen quickly with this kind of result. Yahoo.
I feel I know more about Wegener's, or GPA, if you've been diagnosed after 2011ish when they changed the name, than every single doc in my small town, but I'm so grateful to have my rheumy who specializes in Vasculitis, who can pull the trigger and get things going. Off to Rituxin land I go.
Hi, JasperMarter, I am from the US; I think laboratory parameters for ANCAs may vary. from country to country and from lab to lab. In Sept. 2016, with classic symptoms of PMR, and a very fast and dramatic response to prednisone (16mg/day) before my first labs returned, upon return to the rheumatologist, I had detection of a PR3 antibody of 1.6.
With the continuation of Prednisone, it was at 1.1 when I saw a vasculitis specialist at Johns Hopkins in Baltimore, MD 7 mo later. ( I continued to be followed by my local rheumatologist) .All other tests negative. On JH lab parameters, anything less than 2. does not seem to be diagnostic for vasculitis. The vasculitis specialist suggested a very slow taper of Prednisone by 2mg. every 3 weeks. I got down to 8 mg. and was holding on, when I had a sudden temporary vision loss in left eye. (about 7 minutes) when it came back like a switch had been turned on. I immediately went back to 16 mg., saw my eye doctor( nothing wrong with eyes, field of vision, or photos of optic nerves. Her response was that it must have been a cardiovascular event. So now wondering if I should be seeing a cardiovascular physician. I think it is the PMR with GCA.
Staying on 16mg.; now have tinnitus as well. (never had before). Back to rheum next week. Original shoulder, bicep pain back even on 16mg. Also have very red cheeks; lots of capillaries very visble.
Does anyone know exactly what are the lab parameter are for PR3 ; ? It does not seem consistent among labs, and, as has been pointed out , the disease is very elusive even to the best of doctors. Thanks.
Help I just got my results. My c ANCA was <1:20 with r1 next to it. The reference range is <1:20 so is that a positive or negative?? Its the same so I'm confused now.
Hello Ayla, my ANCA is now 4.4 it was .1 a few months ago.My Dr, does not seen concerned . however i am struggling with fatigue again and have strange lines and or small blister like marks on my hands. what is normal ANCA
I am really lost with the results, I don't under stand if my pr3 anca is high or not, when I was diagnosed it was 5.6 and after 2 years of rituximab and steroids and antibiotics it's 4.3 and in February I had my first c anca result which was a weak positive , can anyone help or explain please. Thankyou,
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