P-ANCA positive result

Why do you have to have another blood test if one is already positive. Esr count was 50, Dr said should be between 10-20 for female, so have inflammation. My Dr admitted he knew very little about vasculitis. Said another anca test was to try and pinpoint which vasculitis it was as drugs used to treat were very strong. Meantime I have asthma, tingling/burning sensation in both legs. Severe livedo reticularis in legs trunk and arms. Spots which bleed, never heal on legs, elbows and shoulders. Prescribed tablets for Raynauds, high blood pressure, asthma, sinusitis for which I had a NESS operation, IBS with severe distented abdomen, stomach pain, back ache and chronic pain in buttocks, restless legs syndrome, headache, ringing in ears and otitis in ears. I reckon I know more about vasculitis than my doctor! When I question they are very vague. Although my symptoms seem to be mild I am concerned my vasculitis, which I believe to be Churg straus syndrome will get worse. Anyone out there had the same sort of brush off?

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  • Hi Linmur1957,

    Sorry to hear you are having such a bad time.

    I would think that the only way to get a definitive diagnosis would be to see a vasculitis specialist at a multi disciplinary clinic.

    Vasculitis UK have an excellent helpline, they will be able to help you further with this. Their phone no. is 0300 365 0075 or e mail john.mills@vasculitis.org.uk

    Good luck

    Keyes

  • Agreed get to a specialist ASAP. it sounds like it but they will find out and get you sorted and treated. Recently I had a blood test and my ESR was 300mm//hr. I am hoping that is 30 on conversion and a slight inflammation but all other bloods are normal. my bp is now 86/60 and that is the good arm, but i am going in for more tests in march, under a rheumy.

  • The basic ANCA test as such is either positive or negative - yes or no. A second test is done to get what is called a "titre" - the blood is diluted to find how much antibody is present. (A serum sample is diluted in steps and each dilution is tested for the presence of the antibody. The greatest dilution at which the antibody can be detected is the titre. For example, if a serum tests positive after being diluted 64-fold, the titre is 1:64. The higher the titre, the more antibody is present in the blood.)

    Other tests are also done to identify WHICH specific antibodies are present: different diseases are associated with different antibodies. A positive ANCA and PR3 antibodies is common in Wegeners, positive ANCA and MPO antibodies are found in a whole range of other vasculitides including microscopic polyangitis, glomerulonephritis, Churg-Strauss syndrome, and Goodpasture's syndrome. MPO and p-ANCA may also be present in other autoimmune disorders, such as systemic lupus erythematosus, rheumatoid arthritis, and Sjögren syndrome.

    Be patient - providing this is a specialist who is being noncommital - because as the others have said, you need a specialist. If you are still under a GP - ask why you haven't been referred. However, it is possible that a list of tests has been suggested to a GP by a specialist and until the results are available there is nothing to be achieved by being looked at by someone else. Once all the test results are collected together they have a better chance of identifying it.

    Once they have a better idea of WHICH vasculitis you have they can make a decision on treatment. The therapies are often not nice and don't work for all forms of vasculitis so there is no point jumping in with the wrong one. Also, there are specialist centres for different forms and they offer advice for doctors with less experience if you are too far away to get to them

  • Thanks for your reply. I was referred to a dermatologist who was very nice and concerned. He telephoned me with the results and so I was then back to doctor who ordered the second test. I am dreading this as I do not know what to do if it is negative. I have test next week with nurse. I saw a rheumy 8 years ago who was an arrogant so and so! I will endeavour to find out if there is a vasculitis specialist in north east Scotland. Thanks

  • I understand from the Route Map that only around 50% of CSS cases show as ANCA positive. However another white blood cell eosinophils are usually present in high numbers. So don't be too concerned if you are ANCA negative.

    Chris

  • In medicine "negative" doesn't mean the same as "It's not..." - in some diseases an antibody is present, in others it isn't. Have you seen the pathways they sometimes use to decide what action to take? There is a question to answer yes or no to - then 2 different ways to proceed depending on which. Then there is the next question, yes or no. And so on. To some extent that is how investigating a vasculitis is and that is also why it can take a long time. Some of the tests can't be done in a few minutes or even hours, some have to be sent away to a specialist lab. They are playing detectives - and it isn't easy when things sometimes come in disguise.

    Try this

    thelaurencurrietwilightfoun...

    There is someone in Aberdeen and it isn't that far to Glasgow or Edinburgh really is it?

  • Really delighted to hear there is someone in aberdeen and no glasgow and Edinburgh are not far away. Thank u.

  • Yes I made a post over a week ago along the same lines , in Australia we really only have 1 or 2 doctors with a degree of knowledge on CSS , it's very difficult , I cannot get answers to simple questions ie I get kidney stones , so you avoid dairy big time , but with prednisone you need calcium , doctor will not give an answer ,best I could come up with myself was sardines , but it only partly 20% plugs the whole , that's the easy questions , go up a few levels and its a void

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