ANCA +ve not specific to Vasculitis?

[RoseFlowerDew]

Hi,

I recently was seen by a rheumatologist for increasing symptoms which include right sided chest pain and increasing cough, formation of a Christmas Tree cataract and other symptoms. He mentioned that ANCA +ve tests is not specific for Wegner’s etc. yet I have this cough which is not resolving and my eGFR has fallen since my first positive ANCA test in 2017 from 91 to around 70 last year and possibly worse this year.

I was diagnosed with autoimmune B12 deficiency when I fell unconscious and gave myself whiplash back in 2016. I know that B12 issues affect the immune system very badly and I think this affecting my blood tests when I do see the rheumatologists who seem to not understand this aspect. I know that when I improve my B12 supplementation to support my neurological symptoms of pernicious anemia I feel worse eventually with the rheumatological symptoms.

I find myself frustrated with ongoing chest pain, coughing, seeing my eGFR drop and yet not receiving a diagnosis. In fact after every ‘clear’ or ‘normal’ x ray or mri’s I’m treated more and more as if I’m imagining things.

Has anyone had similar experiences?

[AmyS1]

Ask for a referral to a specialist vasculitis centre. Call the vasculitis uk helpline for info

[Chipper03]

I agree, speak to the experts. EGPA is the type of vasculitis which affects the lungs as well as other organs, with a persistent cough they may consider this too. One of the blood markers for it is the eosinophils count. Unfortunately with rare diseases diagnosis can take many steps, do keep asking. And yes, I had similar diagnostic experiences, from ‘atypical asthma’ to ‘change your job’ ‘ chicken pox’ and ‘mainly psychological’. But once I had diagnosis and treatment so much improved. Good luck!

[Fay13]

Hi yes unfortunately it took me a few years to be diagnosed, even a year after ending up in hospital. I didn’t tick all the boxes so they took their time before wanting me on meds, until it reached a stage I was so tired and could barely move, that I decided to pay private and made an appointment to see Professor D’Cruz in London, who was amazing and confirmed my diagnosis systemic anca vasculitis and my treatment started from there.

I too like you questioned was I going out of my mind, was it me etc etc. Don’t give up, thinking of you. Good Luck

[Holland13]

Hi, my daughter took to years to be diagnose , she is since 3 month seeing a rheumatologist, who do you see in London?? Which hospital?? ..