Positive anca and uveitis, does this mean I have vasculitis? Seeking advice pre-diagnosis

[EA_24]

hi everyone,

I’m not yet diagnosed with vasculitis, but it has been raised as a possibility following a positive anca blood test. I’m waiting for some more results to tell me what titer/presentation etc. I’m really scared about the possibility of vasculitis, and looking for a bit of advice/support while I wait for more results. I’m feeling particularly freaked out by the unknown of it all!

Ive added a huge paragraph (sorry!) about my symptoms below, and I have a few questions at the end. I’d really appreciate if anyone could answer these questions or offer a bit of guidance.

Symptom-wise, I have suffered from recurrent anterior uveitis and episcleritis for the past 10 years. We always suspected this is because of an autoimmune condition (I have a history of Grave’s), but nothing particular was ever flagged. Recently my ophthalmologist ordered a full autoimmune screening panel, which came back positive for ANCA but otherwise fine. Other than the eye problems I have some generalised symptoms which can come and go - fatigue, joint and muscle pain all over (but particularly in the knees), poor temperature regulation, and headaches. Ive also had a few potentially nerve-related symptoms which persist for a few weeks, then go away for months at a time - pins and needles in my lower legs and feet, shooting pain in my arms. I’m diagnosed with Raynauds, and have dishydrotic eczema on my hands. My blood pressure is quite high right now, but this might be related to ongoing stress at work. I don’t have the typical vasculitis rash, no sinus issues (I do have a bit of a dry crusty nose, but not sure if this is actual nasal crusting or not), no cough, and no kidney symptoms as far as I’m aware (but kidney function has never been tested). I’m a 25yo female.

Ive done some research, but I’m still unsure about a lot of things:

- Does a positive anca test always indicate vasculitis, or could it be something else?

- Has anyone been diagnosed based off positive anca test and general symptoms alone, or do you need to have sinus/lung/kidney involvement?

- Has anyone experienced eye symptoms as the first manifestation of vasculitis?

- What sort of tests do I need to request to rule out or confirm vasculitis?

- Do other people’s symptoms usually come and go (or did they, pre-diagnosis)?

Thanks very much for reading

[philtw]

Hi,

A positive ANCA is likely to be GPA (Wegener’s Granulomatosis with polyangiitis), which is what I have. Main issues for me is nasal, and ear when it first manifested along with feet, hand, knee and elbow joint pains......also malaise and severe weight loss, as during my last relapse 6 months ago I lost 12kgs.

I was first diagnosed with GPA when they found two coin lesions on my lungs during an annual company medical.

I manage the condition as I had PAN when I was 21yrs old, but I relapse if my steroids go below 10mgs.

Other blood tests include CRP and ESR, these indicate if you have inflammation or infections....

This is all treatable with steroids and a maintenance drug such as Imuran.

Let me know if you need any further help ?

[AmyS1]

Nose crusting and eye problems are common in relapsing polychondritis and also GPA. As are your general symptoms. Speak to the helpline.

[Investigator1]

Hi EA_24. The symptoms you describe are similar to what I had, I’d like to know what the positive marker count was, mine was 177+ my symptoms were headaches, Episcleritis, short of breath, body pains and kidney function reduction (I’d didn’t know because kidneys don’t have pain receptacles) and yes I was diagnosed with GPA. I was also told that stress can and will excelerate or trigger Positive ANCA. Thats the bad news out the way now the good news.

Having GPA doesent mean that’s it means I’m going to be ill now but this part is up to you mostly. Yes you can wallow in pity and feel sorry for yourself and truly I understand that, alternatively if you were to go onto treatment you can be stubborn and focused and refuse to let it beat you, live a near normal life and make things brighter. I am 63, diagnosed in 2019, people in the same position as me were thinking a about the worst, I walked 5 miles every weekday and bought a new pushbike, that kept the weight gain from steroids away. I recently did Movember and set myself a target of 100km additional walking from normal activity, I did 164km even when I had mr Rituximab treatment in the middle (raised some money too) it made me feel great. I travel the world and do what I used to. Please please fight back and win, trust me it’s the only way. Your young and that’s a positive thing and I evenan older person with uncertainties like me can live a near normal life then you can. I was bricking it to start with, lost my confidence and yes I have days where I feel crappy with the treatment and yes worry about catching viruses ( I’ve had Covid 3 times, last one no drugs);but I am still batting at 63 not out. Take care and forward. Nick.