Child with positive c anca

[veeb16]

Hello, my daughter has been seeing a rheumatologist for the past three years for a positive ana. She's had symptoms come and go but has not been diagnosed with anything. She has her blood drawn every year and was just found to be c anca positive titer 1:40. The doctor didn't seem to be concerned but I am now worried about what this could mean. Does anyone have any experience or advice with this ? Thank you.

[Fred27]

I have Anca Vasculitis in 2015 it hit my kidneys where at 6% with only days to live,

I was on chemo it was to be 6 months but only 3 months it effected my bone marrow and liver was put off and put on a tablet called which I cannot recall the name I ended up allergicEd to them because I nearly died twice,

I was then put on a tablet called Myfenax 250mg Mycophenolate

Which now I am in remission and doing well no sign of the anca vasculitis.

At the beginning I was in Dialysis And plasma Was on dialysis for only six weeks was very lucky,

I hope ur daughter gets better oh I know what she’s going through God bless you both

[Mooka]

Having a positive anca doesn’t automatically mean she has Vasculitis, a diagnosis would be made based on other symptoms too. If you are worried you will need to ask her doctor more questions. Good luck.

[veeb16 in reply to Mooka]

Thank you for replying. I have a doctor's appointment in a few months but in the meantime do you know what would cause a positive anca. Could the anca disappear or is it always positive once found to be ? Have you heard of anyone having a positive anca and still healthy?

[Mooka in reply to veeb16]

Hi

Tbh no i don’t know of anyone with a positive anca that doesn’t have Vasculitis But I don’t know why a doctor would order the test and then not follow up on it either if it’s positive. You can be anca negative and still have Vasculitis. You may find this of some help vasculitis.org.uk/about-vas...

You may find it helpful to call the Vasculitis Uk helpline where you can ask questions in private of people with far more knowledge than me. tel:[phone]. You should also look at the Vasculitis Uk website which is full of information on the three different Anca Vasculitis. The helpline should be able to point you in the right direction of a Vasculitis specialist if you still think that’s what your daughter may have. Some of these will also look at lupus which I assume is another test they are running on your daughter.

Good luck I hope you get a diagnosis soon as sometimes it’s worse not knowing but the nature of the disease is a lot of us spend a long time trying to get the diagnosis. Please let us know how you and your daughter get on. X

[veeb16 in reply to Mooka]

Thank you

[Suzym2u Moderator Vasculitis UK]

Unfortunately the ANCA is not 100% reliable and does result in both false positives and negatives, there is also a low level of ANCA often found in health people. However it would be wise for your daughter to see a paediatrician with knowledge and experience of treating and managing children with Vasculitis. Such as Prof Paul Brogan at GOSH or Dr Larissa Kerecuk at Birmingham Children’s. Where abouts in the UK do you live?

[veeb16]

Thank you for replying. Actually, we live in the u.s.

[Suzym2u Moderator Vasculitis UK in reply to veeb16]

Is you daughter being looked after well? How are things going?