Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ear issues, vertigo, headaches and inflamed arteries in various areas, specialist and GP are testing for ANCA vasculitis.
How conclusive is a positive ANCA blood test ?
they are testing ANCA (doesnt say C or P so assume both), ANA C3 and C4. ENA,CK and urine ORB 8 Protein and MCA casts.
Really need a diagnosis as I cannot work anymore and need this for a sickness policy.
If ANCA is positive, what radiological tests/scans are best to have ?
Is biopsy required and where would they take sample from ?
regards
Dale C
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Oztrax
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I was diagnosed with GPA in 2013 and still have it, I keep relapsing when I go low on steroids......, which has just happened thi spast month.......PR3 which is ANCA, I cant remember if its P or C test, ANCA will show positive certainly for GPA if its >2.......
ESR and CRP are infection markers and may show hight but not always......
Hope this helps.......
Note, I had PAN when I was 21yrs old and was in full remission after 5yrs, I got GPA when I was 51yrs and still have it.......but I dont let it affect my daily routine and normally manage my own steroids if I thnk I am going to relaspe......
Hi Oztrax, there is a simple article explaining about ANCA positive blood tests:
What is ANCA? - Vasculitis UK
and the three types of vasculitis. Mine is GPA vascultits from 2020 and I also presented with inner ear fluid and severe fatigue. Much better now after courses of steriods (prednisolone) and Rituximab infusions but still have ANCA positive blood tests. The blood test CRP is good to see if having a flare. Creatinine to monitor kidneys.
The diagnosis is with ANCA positive test and without biopsy. Unless your kidneys are affected in which case the Renal physicians like a biopsy. The important thing is to get a diagnosis and early treatment to get into remission before vascultis damages your organs. Then you can live a normalish life with blood tests every few months to monitor for flare ups.
Sometimes the side effects of drugs is an issue but they are absolutely necessary drugs and lifesaving. Good luck.
Richard thanks , would like to PM you as my symptoms are very similar, inner ear pain, fullness with vestibular and vertigo issues, have got nowhere with 2 lots of ENT doctors, Neurologist and Rheumatologist, and the hospital emergency department.
Fatigue !!!! doctors dont comprehend what you are talking about, feels more like Chronic Fatigue Syndrome, but they print off a pamphlet for you about general fatigue, not realising you can only get out of bed for an hour at a time.......
Sort of at my wits end here, 3 years since the fatigue started. See my GP tomorrow hopefully ANCA and ANA test results are in, but he wont give me PRED till he has a diagnosis which is like the cart before the horse, had a constant headache since July 26th, its 8/10 right now, best was 3-4/10 2 weeks ago.
Am still trying to work full time as I am 59 years old, but just cant do it anymore, can get some retirement money when I turn 60. I cant believe none of these doctors will even consider vasculitis, even got roadmaps of extremely sore blood vessels over my scalp.
You can still have vasculitis and have a negative ANCA test result and vis versa. A good doctor will look at all your symptoms and history and then probably a biopsy. In my case it was a kidney biopsy which confirmed my diagnosis. I’m so sorry you’ve been struggling for so long. I hope you get a diagnosis and some treatment soon. If you look at the vasculitis U.K. website it is full of information including the blood tests that are carried out and workplace issues Sorry I can’t get the link to work
If your ANCA is positive they will investigate for ANCA associated vasculitis. The test that they will do depend on your symptoms mostly, for example I had a CT-scan of the abdominal area as I had severe abdominal pain and a bronchoscopy to check nodules in the lungs.A biopsy is usually done to confirm diagnosis. They would biopsy the organ showing inflammation. I had a nose biopsy.
Long ramble here. I was diagnosed with GPA in 2023 after six years of being misdiagnosed by a previous rheumatologist. She decided I had polymyalgia rheumatica, which can present in a similar way as the early stages of ANCA vasculitis. I was P-ANCA positive all those years with rising MPO antibodies. Luckily she put me on steroids which kept me from progressing too badly, though by the time I got my new doctor I had interstitial lung disease from the GPA.
I had inner ear issues (balance problems), some hearing loss, tinnitus, long term sinus issues, terrible joint pain, fatigue, elevated CRP inflammatory marker. A few years in I got a lung CT that showed calcified granulomas, micro nodules, and bilateral ground glass opacities. I had not lost any lung function, probably due to never having stopped steroids. My then rheumatologist still refused to change her diagnosis without a lung biopsy. (A bronchoscopy would not work based on where they needed to sample.) The cardio thoracic surgeon was frank about the need to be hospitalized and the multi-week recovery period for the biopsy. I declined.
My pulmonologist said to get a doctor with more vasculitis experience. After much effort I got a great doctor at a famous teaching hospital. He painstakingly reviewed six years of imaging and lab work and said he didn’t need to put me through a lung biopsy. He dx ANCA vasculitis. GPA.
I opted for Rituximab infusions because that’s the gold standard these days. After my two induction infusions last year my lungs improved overall, my antibodies dropped from over 100 to 3.9 and both inflammatory marker tests went to normal. I get my 4th infusion at the end of this month. Almost weaned off steroids after 7 years.
Sadly I still have crushing fatigue that affects quality of life. I’m still hopeful it can be improved on but … had my adrenals checked and my cortisol is fine. Seems my ears will also not improve.
Thanks Susan, now I dont feel like "Robinson Crusoe". Its been great to hear from you people as the inner ear connection with vasculitis I wasnt aware of till recently. I am type 2 Diabetic which is one reason my GP is avoiding steroids. Also I found only yesterday an ANCA blood test result from 2.5years ago I had that was negative. I must mention I am on 20mg Leflunemide (a DMARD) for Psoriatic Arthritis, been on this for a number of years. Whilst it is not a primary vasculitis medication, it may of helped somewhat (or maybe just masked the vasculitis effects somewhat)
I think everything has finally come to the point where now with the constant headaches and the inflamed blood vessels in my neck and head (which has been the last 10 weeks now), I need help and a positive diagnosis. NSAIDS were helping a lot with the constant headache and the neck/head inflamation, but now its not enough. Its been a tough journey and previously the fatigue was the main symptom that was concerning me. ESR was 26 and CSR 33 ten weeks ago but as they started dropping the doctors didnt want to pursue vasculitis diagnosis. At that stage I thought this was like GCA symptoms. With further research I now understand vasculitis has a number of different forms and effects. Particularly that other blood markers need to be tested and considered. This may seem left field but I did test positive for HSP70 antibody 2.5 years ago but not ANCA (and I think ANA was tested as well)
HSP 70 test was to assist in an AIED diagnosis, but the first ENT doctor dismissed it. The next lot of ENT doctors said the SNHL was the wrong frequency range for AIED and MENIERES but did put me on a max Betahistadine medication (for menieres/cochlear hydrops), I waited 18 months for the 2nd lot of ENT appointments as these were hospital specialists.
Rheumatologist only seemed to look at ESR/CSR results, and again this was hospital specialists and sometimes only see a registrar not the main specialists. Only see them every 6 months.
Apologies for my previous rants, I was quite unwell last night , nearly went to hospital ED for my headache. My wife actually told me the headache started on 12 Th June (3 months ago) I remember now it just came on suddenly that evening and has never left.
The hospital physician forgot to send my ANCA test results to my GP so no progress today except 1 week supply of 20mg Prednisone at least might be able to go back to work next 2 weeks
So the plan was the hospital physician send test results and letter to my GP who would then send onto Rheumatologist to arrange an appointment. blah blah blah......
I have decided to put a Plan B into action, which may sound a bit unusual but arranged a referral to an endovascular surgeon, figured he might know more about arteries and veins than doctors I have been dealing with, vessels bulging in my my scalp in a number of places and extremely sore at times, he may be able to tell me whats going on. I would be prepared for him to biopsy one of them on the spot if it meant a diagnosis positive or negetive.
Wierd thing is I feel so much better today and I didnt do anything, (headache 4/10 ATM) its like these flare ups last from 4 days to a week then go away. Not saying i feel 100% , but can get up from lying down and do stuff. But more importantly feel in better spirits to go on.
Thanks to everyone that has responded to my 3 posts, you are all correct. A few things have me concerned ATM.
1. Constant headache for 12 weeks is not normal , if isnt GCA/Vasculitis then its probably something worse to do with brain etc
2. 4 months ago my blood pressure was 118/80 and even less in the mornings sometimes 98/73, now its is consistently 160+ and 100 +, am on blood pressure medication and have been on it for years. So inflamed arteries in my head and neck and high blood pressure that wont come down sounds like a bad combination an inch away from my brain.
3. Took my first 25 MG PREDNISONE tablet today, my blood sugar went up to 14.9 within a couple of hours, normally my level is 6.4 to 8.4 every day anytime I check it. Am on OZEMPIC 0.5mg once a week presently for TYPE 2 Diabetes. I had this under excellent control for a number of years. Can only imagine what level would be like at 80 mg dose. Just checked it now 10 hours after the PREDNISONE and its still going up (15.2)
4. Only treatment that I could use would have to be RITUXIMAB, CYCLOPHOSPHAMIDE or AZATHIOPRINE, 2 of these are biologics, very expensive here in Australia and only a Rheumotologist can apply to the medicare system and get them approved at affordable cost. Have not researched their side effects yet.
5. Am still attempting to work full time, one of few qualified in my field at work. Hard to promise employer when or if I can work. Only know after I wake up in the morning eat, take NSAIDS and other meds, see if I need to go back to bed or not. Got about another week or 2 of combined sick and other leave left. Trying to start a claim for a sickness income policy but they want a diagnosis to process claim, either way the policy will take 2 months or more for them to approve. My last option is to withdraw retirement money in small lots which in another month I can access. This growing financial problem worries my wife a lot, who cant work either with her conditions.
I can deal with #5 myself but dont have any control over the other 4 problems.
Just went thru all my private scans, x rays etc, I do not have access to the public hospital scans. This covers a number of ultrasounds (including temporal/head arteries, x rays, ct and mri. Last MRI was head nov 23 all clear.
Only thing I could find vaguely relating to my present condition and used the word "vascularity"was to do with small intestine following a biliary attack I went to the ED with in 2019.
"Several mildly distended thick walled loops of jejunum in the upper abdomen
centrally with mild increased vascularity of the adjacent mesentery.
Appearances raise the possibility of areas of segmental enteritis/inflammatory
bowel disease ?infective ?Crohn's disease. Clinical and biochemical correlation
is recommended."
Why doesnt vasculitis show up on imaging and ultrasound studies ?
Today blood sugar back down to normal level of 7.4 so thats a relief, prednisone must just cause a spike for a number of hours.
Blood pressure however was very high 175/111 upon waking, 2 hours later was 184/124 that qualifies as a hypertension crisis level, took extra BP medication and has now settled at 163/105 after lunch, not great but was worried when it kept climbing. Wondering if its the vasculitis, kidneys or the PREDNISONE 25 mg
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at least might be able to go back to work next 2 weeks
Confused with blood tests
ANCA POSITIVE 
ANCA NEGATIVE EGPA
ANCA and ANA positive
