I've posted a couple of times regarding my 21-year-old daughter and had lots of helpful replies, thank you. We have finally managed to get a copy of her blood test results. They say "ANCA - High positive". The titer given is 1:40. The GP couldn't discuss any further "I know nothing about vasculitis and have referred you to Rheumatology", but she doesn't have an appointment yet and is on a 7-month waiting list. So, I tried googling myself to see what this means. Google seems to suggest that a 1:40 titer isn't high, so I just wanted to ask on here whether that's true?
Thanks and best wishes!
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RedPoppy2
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I'm not expert here but 1:40 does not sound excessive.......at my peak I was very high at 1:160 and finally down to 1:20. I do not think my nephrologist would be worried about 1:40 as long as other markers were in acceptable ranges. Just my opinion, I think 1:40 is not a scary high number. Good luck!
Yes, I'm not really happy about the 7-month wait (and no appointment in sight yet). If it were up to me, I'd try and do something about that, but my daughter says she's happy to wait
Thank you - that is my big worry (that her organs are being damaged and her being unaware). Will have another go at persuading her to do something about it!
I relapsed last July and my PR3 (ANCA) test was about 2, and without knowing the blood test I already told my Rheumatologist was was relapsing as all my signs came back, I am now at 1:3, but still feel like I have fully established......all I can suggest is that the ranges may have different affects on people, the range given is a scale. All my other tests were normal, CRP, ESR which are markers for infections and inflammation.
Interpretation: NORMAL result is NEGATIVE. Results are to be reported as follows: NEGATIVE Result: 2 IU/mL.
Hi RedPoppy2. I’m not an expert too but I know that when diagnosed I was in a fair bit of trouble and was 1:177+ (where the marker stops) after 3 months of treatment it was below 1:100 and after 6 months 1:40. I was told by a Professor that under 1:100 the disease was not harming me. So that’s a marker for you.
However in my humble and limited opinion I know people on here that live normal lives with a marker of 1:40 but the one thing I would say is “keep an eye on it” the rate can rise very quickly and then it’s obviously more difficult. Regular bloods monthly are the key. I have just had my last Rituximab and my level of ANCA is 1:2.8 so low but my bloods from April will be done initially monthly.
Thanks so much for replying - this has put my mind at rest (shame the GP couldn't tell us this). I was upset at the tests saying "high positive", but this obviously isn't really the case and it's a relief to know that she probably isn't in any danger.
I am not so sure about this. 7 months is too long to wait. Tiredness is a symptom of vasculitis.
There is something you could do - buy some urine dip stick tests from Amazon (about £8 for 100) and look at the protein and blood test on the strip. Protein can be one plus and be ok, but ++ is high. Blood test should be 0 (when no period) then you know that there is no kidney damage going on. I monitor my urine once a month.
Also your GP could do a blood test called CRP - that should be less than 5, more than 10 would indicate organ damage and a flare of vasculitis needing treatment. Its your GP’s job.
Thanks for replying - your suggestion of buying our own urine dip sticks is a very good one (should have thought of that myself!), as I am constantly worried that her condition isn't being monitored. She was diagnosed with IgA vasculitis whilst living in France last year (following agonising stomach pain for 12 days and the vasculitic rash all over) and her CRP level was 10.7 at that point - she was prescribed colchicine which is hopefully keeping the inflammation in check. GP doesn't seem concerned at all - by her own admission, she knows nothing about vasculitis. If she's googled IgA vasculitis, she's probably read that it's a non-serious, self-limiting condition. Although, the new presence of ANCA might suggest there's something else going on besides the IgA vasculitis.
I got the urine test sticks last year. I tested them by using one at home just before my test at the medical center lab and the results matched. I find them reassuring. I don't have kidney involvement but since vasculitis seems like a bad game of whack-a-mole I like to test every three months or if something feels off (my doctor-ordered lab work including urine is every 6 months).
Yes I hope so, nobody has worried more than me in the past it’s only natural. I has a similar issue with my GP, so I made an appointment and told here ignorance is not a defence and that she had a duty of care to deal with it. I think the words I used was “ I’ve never seen the Empire State Building but if I was in New York and couldn’t find it I would ask someone who knows how to get there. I’m afraid as a lot will tell you on here, even if it’s not in your nature you have to keep at them. Take care. Nick.
Your analogy made me smile - so true! If it were up to me, I'd have something to say about it/would be putting in a complaint, but my daughter doesn't want to make a fuss (and, as she's an adult, not much I can do about it!)
I understand the normal range: 0.0 - 1.9 iu/ml, so yes 1:40is higher than normal, but not super high? But you now have a baseline 😀
If you are going to be on a 7 month waiting list, I would suggest you badger the GP to do a further ANCA test in a couple of months time to see where the value is then and see if it is trending up or down.
ESR and CRP blood tests could possibly be useful as they are both markers of inflammation somewhere in your body, which could indicate disease activity.
Although the result is not at the top end range it is positive, not borderline positive. What other tests did she have? Seven months is a very long wait, does she have any other symptoms than fatigue and the blisters? I would assume that the GP has done some blood tests to check inflammation markers, kidney and liver function, ANA. Did they do a urine dipstick to check for blood and protein? If not, she should suggest they do.
Did you mention IgA vasculitis at some point? It is q vague memory.
She should ask the GP to chase her referral, I understand that she is young and probably want to dismiss the potential severity of vasculitis but if she doesn't advocate for herself nobody else will.
Thanks for replying, Zoe. We actually spoke a couple of months back on the 'phone (I disturbed your Saturday morning, sorry!).
Not 100% sure what other tests she had - we have really struggled getting any results at all from the GP and I had to really push for her to insist on getting a copy of the ANCA results. The ANCA result also said "P pattern", but no idea what that means. Yes, she was originally diagnosed with IgA vasculitis (though her IgA levels now seem to be "normal" - 2.24). I'm assuming her inflammation was checked and it was ok (she takes colchicine, so hopefully that is controlling any inflammation). She had a urine test back in September (all ok), but nothing since. "RichardGPA65yrs" suggested that we get our own urine-test sticks, which I am going to do.
As well as the new type of blisters on her hands and arms (GP says possibly scabies, but I am doubtful), she also gets the purpura rash and crippling stomach pain (although again the colchicine seems to be controlling this).
Unfortunately, I think the only way she's going to proactively chase this, is if she gets another really bad attack
For what it's worth, my ANCA was over 100 at its highest and in the single digits in the very early stages. I'm MPO ANCA, diagnosed with GPA 2023 (misdiagnosed for the six years prior by my first rheumatologist) . From my lab report:
Indirect immunofluorescence testing for anti-neutrophil cytoplasm antibodies (ANCA) is positive with a (peri) nuclear pattern of staining (P-ANCA). ELISA confirms the presence of antibodies to myeloperoxidase.
ELISA for antibodies to proteinase 3 is negative.
Date 4/25/23
Titer in units: 103
A test with 2.8 or more units is considered positive.
Thanks for replying and for showing me your test results. That makes it seem like my daughter is mid-way - not at the highest, but not single digits either. Quite frightening that you were misdiagnosed for 6 years :-(. My daughter has the P-ANCA pattern, though no idea what that means. I don't think she's had the ELISA test, but that might be something Rheumatology might do when she eventually gets seen.
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ANCA negative now!
ANCA neg
ANCA NEGATIVE EGPA
Anca test
ANCA POSITIVE 
