Proof of vasculitis

[Cathywp]

This is probably a silly question but ....

How would I know if I have vasculitis if my ANCA panel always is negative?

Is there anything other than a biopsy of a vein to confirm vasculitis?

I have no rash. Are there any symptoms that prove it?

Thanks

Cathy

[Hidden]

Hi Cathy,

There are over 18 different Vasculitis types ( Variants ), only 3 of them are associated with ANCA.

Broadly speaking Vasculitis is categorised by the size of blood vessel it affects, small, medium and large. That means it affects capillaries right up to the aorta which is the largest vessel in the body.

Vasculitis is a clinical diagnosis, it made on a mixture of symptoms, blood test, imaging and biopsies etc as well as ruling out other diseases/ mimics.

As it's a rare, complex disease the experience of the Dr you see is so important, the chances of getting a diagnosis is definitely related to how much Vasculitis experience your Consultant has.

As I said before you need to push to see someone with the required experience in order to be diagnosed and treated. Whilst these forums can be helpful they are not a substitute for proper medical advice.

[Cathywp in reply to Hidden]

Hi keys

So I am confused. If 60% of people who have egpa are ANCA negative then how/why is egpa considered to be an ANCA associated vasculitis? 60% is more than half so it is MOST people .....

What does it mean ?...ANCA associated?

Cathy

[Hidden in reply to Cathywp]

This is a great explanation of ANCA.

vasculitis.org.uk/about-vas...

Associated means that patients with GPA, MPA and EGPA can produce these auto antibodies BUT it's not essential for diagnosis. GPA and MPA are more associated with a positive ANCA but not all patients will be positive. For example not everyone with Rheumatoid Arthritis will have a positive Rheumatoid Factor.

So although patients with EGPA have a 60% chance of being ANCA negative patients with other vasculitis variants such as Behcets or GCA are almost never ANCA positive.

I am afraid that medicine is very rarely black and white, there are lots of shades of grey.

[Cathywp in reply to Hidden]

Hummmm ok I can understand that but.....isn't it reasonable to assume that my doctor would already know that?

[Hidden in reply to Cathywp]

It's a common misconception that you need to be ANCA positive to have an ANCA associated Vasculitis unfortunately.

As I have said before you need to see someone with experience in diagnosing and treating Vasculitis, that's the only way you are going to receive a diagnosis and treatment.

[Cathywp in reply to Hidden]

Keyes

Thank you. Wow I am blown away! I have to figure out how to ask all the right questions without upsetting anyone. Wow! I never planned on going into politics!

Thank you again

Cathy

[EOLHPC in reply to Cathywp]

GRRREAT post! Exactly!

I am 64 and diagnosed with small vessel vasculitis secondary to infant onset systemic lupus (+ the usual collection of comorbidities).

I attend a highly respected lupus & vasculitis clinic at a big UK univ hospital. I am sero negative but meet enough official clinical & immunologic diagnostic criteria for my diagnoses to be officially acceptable despite this lack of antibodies.

Am mainly a conscientious “compliant” patient, and spend A LOT of my time, & much of the energy i still can summon up, “looking after myself” while seeing loads of medics - cause systemic illness means i regularly attend a host of multisystem hospital clinics for monitoring + tinkering with my treatment plans. This career as my own health advocate does not come naturally 😆, but my survival depends on it

Luckily, am tending to respond “positively” to pretty much all my treatment plans, which clearly lends credibility to all my diagnoses despite my seronegativity...this keeps my medics mainly satisfied and makes all the political interaction a bit easier to bear

So, I feel as if my life is a constant political exercise, and I love your: “Wow! I never planned on going into politics!” cause i feel the same way!

Thank goodness for great online forums like this one...where we can share quality info + vent about all this

Wishing you the v best of luck, cathy

🍀🍀🍀🍀 coco

PS just to make things even more complicated: turns out my lack of antibodies (= sero negativity) is largely due to the fact i’ve been living with an unusual type of bone marrow dysfunction (a chronic early onset Primary Immunodeficiency (hypogammaglobulinaemia G.A.M....which is not due to my immunosuppression meds)). Go Figure