ANCA Vasculitis

[Selbourn]

I was told in 2015 I had GCA but now after a flare I am told it was always ANCA Vasculitis any more info from anybody?

David

[PMRpro]

They can be very similar in presentation. If they tested for ANCA back then and it was positive - it was ANCA vasculitis. If it wasn't positive then, then it may have been too early to see the ANCA component, How was the GCA diagnosed? Did you have a positive biopsy or ultrasound? Or was it done on the basis of symptoms and clinical history? Only the biopsy/ultraasound are 100% certainty but they are often equivocal.

[Selbourn in reply to PMRpro]

Hi, I did have a biopsy back then but by then I was on high dose pred so it was negative! When I was first admitted to Bath main hospital the rheumatology dept was down in the town so it was some time before they were contacted, in fact I was being treated for sepsis but the A&E consultant thought it was Temporal Arthritis. Later they started using GCA which I think is the American term! O well off to the Nightingale Hospital tomorrow for second IV of Rituximax!

[PMRpro in reply to Selbourn]

GCA is the modern term - reflecting the diagnostic criterion of finding giant cells in the artery wall. Temporal arteritis (not arthritis) is older - because that was where they could see an effect but it doesn't reflect the fact that that is only one artery and isn't always affected, despite the biopsy being thought of as a gold standard even though it is frequently negative for various reasons including high dose pred, intermittent or skip lesions in the tissue and even other arteries being affected but not the temporal artery. As few as 40% are positive - but negative doesn't mean categorically not GCA.

[Investigator1]

Hi Selbourn I was diagnosed in December 2019 with GCA initially mainly because of the state of my eyes with Episcleritis. But within a week after further blood tests and kidney involvement it was diagnosed as GPA. I was initially told it would be just steroids for about 18 months to 2 years but obviously when GPA was diagnosed it became a bit more complex. I tapered my steroids within 18 months so haven't taken any for over 2 years and the only medication I take is Rituximab every 6 months. So if you’re taking that it’s good you’re probably getting the right treatment for GPA. Hang in there. Nick.

[GinnyMa]

David, This sounds familiar. I was diagnosed also in 2015 with GCA, after a biopsy. After 2 years on prednisone I went to Spain to celebrate the end of the disease,…. I thought ! In 2021 I was diagnosed with ANCA vasculitis, specifically MPA, microscopic polyangiitis.. Thanks to Rituximab I am in clinical remission, and get an infusion every 6 months. I asked my Rheumatologist if I have actually had vasculitis all these intervening years and it just emerged again…..he replied that was probably the case. Did you know that research leading to Rituximab was done by Dr. Anthony Fauci in the 1970s! So grateful.

[ZiggyDiego]

I had the opposite experience: was diagnosed with ANCA associated vasculitis in 2017, involving my eyes, nose, lungs, joints, nerves and to a less extent, kidneys. In 2018 I relapsed with severe temporal and jaw pain. Suspected diagnosis of GCA. Biopsy was negative but consultant decided my GPA was mimicking GCA. Permanent damage was done to my temporal nerve so I have permanent neuropathic pain around my temples, eyes and scalp. Rituximab keeps it all in check. Hope it does for you.

[Hidden]

I would like to throw something out here and maybe the PMRpro expert can jump in and give her 2 cents. I was DX with GPA in 2017 and in 2018 was given 8 infusions of Rituxan. I continued taking Prednisone and Azathioprine until Sept of 2019 then my doctor took me off of those drugs and said I was in remission. It was a nephrologist who DX my disease, managed my treatment, and now monitors my status. He is very familiar with GPA. I do labs and see him every 3 months and every 6 months he checks my ANCA titer to see how I am doing. At one of my appointments with him, I mentioned that I read that in the world of Rheumatology, they believe GPA patients should receive Rituxan every 6 months. He scoffed and his reply was, "why would I give you a medicine that is going to kill your immune system and leave you open to serious infections when you don't need it?" I noticed in this thread that there are at least 2 people who said they get it every 6 months. I've posted something similar to this in the past and got a reply that everyone is different and I understand that. But, I feel like people should be their own advocate and fend for themselves. Rituxan is very expensive and some doctors are compensated for prescribing it so even though there may not be a need, they use it anyway. It's been 4 years since I took any drugs for GPA and as I said, my neph checks for ANCA in my blood tests every 6 months and I've been clean. I also give a urine specimen with every lab test to check for blood an protein so all bases are covered. Don't let the rhuemys scare you and make you believe that you can't do without it because that may not be the case. If nothing else, ask to be put on Azathioprine or methotrexate as your maintenance drug.