ANCA negative "limited" GPA

Hi. I have recently been diagnosed with ANCA negative GPA with a "limited" variety of it. I wondered if anyone else on here is the same and what treatment they have had.

[Essex-jill]

Hi Maria

I was diagnosed over 19 years ago with ANCA negative GPA. Unfortunately I was diagnosed very late and ended up with saddle nose deformity and some kidney involvement.

I have had Cyclophosphamide, Methotrexate and Rituximab.

Rituximab is my wonder drug,which I have been receiving for the past 6 years.

Can I ask what involvement you have and what treatments you have had so far.

Sending best wishes to you x

JIll

[Hidden in reply to Essex-jill]

Hi Jill. I only have sinus involvement, unremarkable bloods and scans. All good things for me but making management decisions a bit if a challenge for them. I've just returned from clinic today and starting methotrexate. I only had one episode this January, sent into hospital straight from GP visit and been looked after since. Being seen by rheumatologist and ENT.

[Essex-jill in reply to Hidden]

Hi Maria

Good luck with methotrexate.

You have a good Gp by sending you to hospital immediately.

Pleased to hear you are being seen by ENT/ Rheumatology

JIll

[John_Mills Volunteer]

Where are you seen if you don’t mind me asking Maria58

[Hidden in reply to John_Mills]

Hi John. University Hospital Coventry and Warwickshire.

[AndrewGreen]

Hi Maria. I was diagnosed with limited GPA (-)ve ANCA late last year after surgery to remove a lump from my eye socket. Symptoms are aches and pains around my eyes, nose mainly. Numerous other symptoms which may or may not be related. I was put on azothioprine by rheumy but asked to be referred to Addenbrookes who put me straight onto 6 monthly rituximab infusions. Have been on prednisolone since diagnosed starting at 30mg and have been slowly reducing. Currently on 5mg.

[Hidden in reply to AndrewGreen]

Hi Andrew. It's nice to hear from someone with the same. I know limited is not a word they're using now but it does make that differentiation. I'm on reducing prednisolone which was started for the rash after all tests done, and methotrexate. I'm really lucky to not have any damage and that's probably due to an on the ball GP and being diagnosed that night at a hospital with a specialist! I've met some great people on the Facebook page but again none with this version. My markers are normal and ANCA negative which drops us into the 10% makes us even more rare lol. Was there a reason for the change to rituximab? Thanks for replying and let us know how you get on.

[AndrewGreen]

Hi Maria. I moved from the private sector and elected to be seen by the Addenbrookes team as they are at the forefront of development. my consultant felt that they get better results from rituximab. I guess opinions differ.