PR3 Anca Vasculitis diagnosed 2020, Had last... - Vasculitis UK

Vasculitis UK

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PR3 Anca Vasculitis diagnosed 2020, Had last I fusion until needed November 2021, lung and bowel issues plus rash

Cookyboy1 profile image
8 Replies

Been tapering down on prednisone to 1mg and feet and lower legs have swollen, aches and joint pain, sicky feeling, eyes and nose watery, tardy and foggy head, Blood test came back weak positive C Anca and 4.9 pr3 anca positive has this got anything to do with how I'm feeling.

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Cookyboy1
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Grizzly-bear profile image
Grizzly-bear

Unfortunately this sounds like a vasculitis flare to me. Have they also checked your kidneys given you've got swelling (there are other reasons that you might swell up but they should rule out kidney involvement)? Are you under a consultant who can advise on what treatment to go with to get you back in remission (if this is confirmed to be a flare)? Unfortunately you might have to up your dose of Prednisolone again.

Hope you get through this with as few complications as possible.

Cookyboy1 profile image
Cookyboy1 in reply toGrizzly-bear

Thankyou, yes am under a consultant and am waiting to hear from her, was stable but noticed that p anca in 1 month since tapering prednisone has risen from 4.3 to 4.9. Never had a weak C anca result before in fact never had a C anca result until now.

Main1234 profile image
Main1234

Are you on any other medication for your vasculitis? Have you any kidney involvement or high blood pressure? Agree with previous post it does sound like a flare. Hope your consultant returns your call before the weekend.

Cookyboy1 profile image
Cookyboy1 in reply toMain1234

Had 2 years of rituximab every 6 months prednisone, 60mg after diagnoses, Co-trimoxazole 3 times aweek, blood thinner every day after having D V T. Water tab every day and Losartan for high blood pressure. Have been feeling a little better today but swelling hasn't gone down.

Main1234 profile image
Main1234 in reply toCookyboy1

Hopefully your consultant will be in touch. Might be worth taking your blood pressure and checking your urine. Glad you are feeling a bit better but you still need to speak to your consultant.

Let us know how you get on

Cookyboy1 profile image
Cookyboy1 in reply toMain1234

Will do, thankyou.

in reply toCookyboy1

Mate, I feel for you I really do, you don’t know wether your coming or going. Everything associated with vasculitis is a nightmare. 2.5 years on and I’m no better off. I’m about to sack my rhumatology team but THEY don’t know it yet😜. Good luck mate and I hope it all settles down for you. 👍

eh66 profile image
eh66

It sounds very similar to my Vasculitis attack; eyes, joints, swollen legs, and I had kidney involvement too.

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