ANCA test

[Linmur1957]

To follow on from my post regarding technical issues as to why my bloods were not tested. I had to ring health centre again and question as to why no one had rang to give me a satisfactory answer. They have come back and said that the lab did not have enough information to carry out test!? Receptionist has now said that they will do test now and to ring beginning of next week for results. I do not believe that this anca test will be carried out properly and am being fobbed off as health centre nurse had never ever heard of anca and my doctor was basically the same. Does anyone know for sure how long before you get result back for anca test. I was p-anca positive in December 2013. I think the stress of it is causing the beginnings of a flare as the livedo on my legs are really prominent, have sinusitis,headache, sore eyes, swollen glands on neck, and my persistent cough is worse. And need to use my inhaler at bedtime. But still no diagnose.

[Hidden]

While I was having an infusion the other day I met a lady with similar symptoms to me, we both have WG and both diagnosed last year. She, unfortunately was only diagnosed after her husband took her to a&e where she was transferred to an hdu. She remained in hospital for 3 weeks.

I located a specialist clinic (ENT at my hospital refused to diagnose my condition despite being ANCA+) from a quick Google search and asked my GP for a referral to the consultant there. I took with me all the relevant information, including the flow chat from the VUK website. I was receiving emergency steroids within a couple of days and have just finished my cyclophosphamide cycle and I avoided a hospital admission. I guess what I'm saying is if you want s diagnosis you're better off going to hospital where they'll do all the tests you need to preserve your health and peace of mind. Good luck and good health.

PS don't be fobbed off by the receptionist, we all know they go through specialist training to be that difficult and feckless.

[jaydub]

Your symptoms sound exactly the same as mine and I have been diagnosed as having Churg Strauss Syndrome. I have regular blood tests at my local health centre in Bristol. Results are generally back within 3 days, but have taken a week. They were not initially familiar with the ANCA test but CSS is a rare disease, so I guess a rare test should not be a surprise.

[PMRpro]

If the lab now has the correct information from the GP the test will be done properly - if the GP just put "x y z symptoms" on the form the lab may have a screening level where more relevant info is required - the test is not just a single, stick it on an automated analyser and get a result one. There is a "simple" single version and another that covers 3 different tests as a panel. They will have needed to know whether it was being done for diagnosis or for monitoring - and since it is both relatively expensive and done by hand, possibly not even in your local hospital lab but need to be sent to another hospital, they need to be sure it isn't being wasted. I suppose a general nurse might not have heard of anca - but the GP certainly will have though not know the ins and outs of how the lab deals with it.

The anca will not necessarily provide a diagnosis - but it should provide information directing the diagnosis towards a smaller group of options. Diagnosis of vasculitis or any autoimmune disease can take a while - so be patient. Once the GP has a bit more information he may call a specialist to discuss what he has found so he can refer you to the best sort of person rather than sending you to one who then has to send you somewhere else. It is a real detective job - and you know how long that sometimes takes! FatFaceBob is right about insisting on a proper specialist - and knowing all your own info. But don't wait and wait - ask your GP why he hasn't referred you yet and see if his reasoning is fair.

[Tony-LakeDistrict]

. I now have my bloods taken at my local surgery , But the request for them comes from my specialist the results I normally receive within 24 hours but the Anca result can take up to a week

The nurse taking the blood didn`t know anything about p-Anca or vasculitis

we have to remember that the majority of surgery's have never come across a case of Vasculitis

I don`t think a Dr would normally order an Anca test, as the results have to be taken in relation to other markers

"Get referred to a specialist "

When you find one and start on your treatment, ask to go on renal patient view, you will be able to look at your results on your home computer, which I have found a comfort

Tony

[Derek]

I had flue for a week and it seemed to be continuing because I had acute pins/needles feeling in my limbs and unbearable pain. My GP did not diagnose vasculitis and for 3 weeks he prescribed increasing pain relief only. On the 4th week I called 999 and, after blood tests, was diagnosed with CSS. Now, if anything untoward is wrong with me I have direct access to the Rheumatology Team. For common illnesses I am to consult my GP but will ask, and get, a referral to the appropriate hospital department. I notice you say that your ENT doctor would not give you a diagnosis. With respect, an ENT doctor is not likely to connect your symptoms with an autoimmune disease. In my experience the rheumatology consultant is most likely to have detailed knowledge in this subject because arthritis is an autoimmune disease. This consultant will ensure that you have all the separate blood tests required. I would, as you have been suffering for so long now, insist on being referred. If that doesn't work go to A&E ensuring that you do not play down your ailments, exaggerate them. My wife, an ex nurse, has told me to do this. Lastly, do you know if your GP has the Vasculitis Route Map and have you read it?

[Hidden in reply to Derek]

Hi Derek, as most of my symptoms are in my upper respiratory, in particular my sinuses and nose, it was very possible for ENT to make the connection, the consultant I saw would not confirm my diagnosis and referred me to a respiratory Dr, which took a month...by which time I had been treated elsewhere. I have been told at least 75% of WG patients present with these symptoms and are therefore picked up by ENT who carry out blood tests and biopsy for the diagnosis. I now see an ENT consultant specialising in vasculitis as I still have deterioration in my nose and on going problems associated, which may have been prevented with earlier diagnosis. Cheers and good health FFB.

[Derek]

Hi Bob, CSS patients present with the same problem and can have late onset asthma. Before diagnosis, particularly from the 2 year point, I was being treated with worsening asthma conditions along with my sinuses. The latter being referred to as rhinitis and treated accordingly. within these 2 years I was treated for suspect pneumonia (despite having the jab a year previous), perforated eardrums, urinary tract problems (nothing found on tests), loss of hearing and the final one was flu. After a weeks flu it still took weeks of pain before I took things into my own hands. With the best intentions the GP was treating each ailment in isolation. But, my consultant did pick up on a blood test result in the year before diagnosis, which should have triggered other tests but wasn't acted on. If you feel you are within this 2 year period don't expect a firm diagnosis. This is only likely to happen with the appropriate referral and correct blood tests.

[Hidden in reply to Derek]

Ok, thank you.