ANCA NEGATIVE EGPA

[ElaineRH]

hi, quick question- how many of you with EGPA are ANCA NEGATIVE?

I know that only 40% are ANCA positive yet surprises me that some consultants still like to insist it’s hugely relevant?…..

[Chipper03]

Over the 13 years since EGPA diagnosis I have been tested both positive and negative ANCA, a few times each. I’ve never understood how come really, and it never seems to be related to how I feel. Not sure if this is helpful for you!

[Investigator1]

I have GPA but positive but only about 4-5, my consultant has told me if I become ANCA negative that’s it I am off the Rituximab. There must be other factors though like inflammation markers, blood counts and platelet readings that also kick in. I don’t really understand them but as far as I know I am always told my bloods are spot on and I feel fine apart from some minor side effects of the Rituximab. Now also a bit confused, sort of. Nick.

[zoe69 Moderator Volunteer Vasculitis UK]

Of the ANCA associated vasculitides, EGPA is the one most patients are ANCA negative - around 60%. In GPA for example less than 10% are ANCA negative.

I have GPA and have always been ANCA negative.

Unfortunately many doctors think that if you are negative the possibility of having AAV is almost zero even if you have symptoms. That's why sometimes a referral to a doctor with good vasculitis knowledge is necessary.

[IPS70]

I am ANCA negative when I was diagnosed in 2014. Since then I haven’t been tested again, so don’t know if it is changed. Saying that I haven’t seen my consultant since Dec 2019. Hospital is keep cancelling my appointments. I am not even sure if I am still under his care.

[Churg]

I have have always been ANCA negative (I have EGPA) . My take on it is that it is not not a very good reflection of disease progress but a a very useful marker which points to a diagnosis of vasculitis. That is perhaps why the ANCA negative sufferers often have a delay in diagnosis. My bloods are quite normal now but I know that I am not quite in remission. I will not be letting anyone reduce anything until I am in that happy state, unless they are doing harm!

[MIK65]

I was diagnosed with EGPA in December 2020. The ANCA levels were extremely high but the diagnosis was confirmed with a kidney biopsy. Due to inflammation of the joints and peripheral neuropathy I was initially on intravenous antibiotics and steroids. This was later moved to oral steroids and the usual medications to accompany them. I received eight cyclophosphamide infusions over a number of weeks, at the end of which I was ANCA negative and deemed to be in remission. I was then prescribed Azathioprine which I continue to take together with the prednisolone and other meds. My consultant is a renal specialist so tends to concentrate on the CKD which is stable as are my other bloods. My main issue is the peripheral neuropathy which affects my right hand, legs and feet. (This was not helped by a DVT in my leg early in my treatment). I reported concerns that the numbness in my feet appeared to be getting worse. Although my Consultant insisted I was still in remission she did agree to further nerve conduction studies which confirmed my thoughts regarding my feet (my hand has improved significantly but some fingers have numbness). I have a good relationship with her and have no concerns over my care, she has referred me to a neurologist (appt awaited). Apologies for the long post but I have wondered whether there may be too much reliance on the ANCA levels as I continue to experience other symptoms including extreme tiredness. Whatever the case I do feel extremely well supported and am grateful for the care and ongoing monitoring that others appear not to have received.