PMR and Vasculitis

[PEC2]

I was diagnosed with PMR in December 2019. Up and down on prednison. Recently, I went to a new Rheumie. He reviewed my entire file and commented that i had an ANCA level that was "wildly positive" in 2020. Told me no one appears to have followed up. He went through lots of questions re symptoms like chronic sinus problems, shortness of breath, weight loss, etc. He repeated the ANCA test, which was an 8 (the machine does not measure higher). The normal level is less than 1. Told me i have ANCA vasculitis. He feels i did have PMR but may have already had vasculitis. Has anyone else experienced this? How are you managing? Thank you as alway. This platform is indeed a life preserver.

[PMRpro Ambassador]

If you had a positive ANCA back then, it should have suggested to your doctors that this wasn't part of the PMR/GCA spectrum but a different form of vasculitis. And this new rheumy saw it straight away. The questions he has asked probably refer to what used to be called Wegener's vasculitis, now called GPA, and I recently was looking stuff up for another reply and saw an article about GCA/PMR coexisting or overlapping with GPA.

pubmed.ncbi.nlm.nih.gov/332...

I googled "GCA GPA overlap" and got several different references for that. It is rare - but not that rare it seems. They can coexist.

Has he said anything about changing your treatment? You might get some info over on the VasculitisUK forum - fairly sure they have a few GPA patients there who are on rituximab.

[PEC2 in reply to PMRpro]

Thank you! I wwill also do some research. I am currently tapering from 5 mg predisone to 4.5. He feels i foing well. All my other labs were very good. He wants me to hold at 4.5 until at least end of May. I am very disappointed other docs missed the ANCA results. On we go. Many thx PMR PRO

[PMRpro Ambassador in reply to PEC2]

I don't understand it to be honest. It was something I learned fairly early on, that if a patient with ?GCA has a positive ANCA is is a sign to look further. If I know, surely they should? I take it you don't have any of the more typical symptoms of GPA?

[PEC2 in reply to PMRpro]

I have dodgy, or what has been described to me as reactive lungs. Asthma and mild COPD. Never smoked but around 2nd hand smoke as a child. Ear aches but always thought that was related to chronic sinusitis. Tingling in feet and sharp pains in toes, like an electrical shock. No doctor has ever asked me about these issues all at once. Each treated separately , and no one.put the pieces together I am guessing.

[PMRpro Ambassador in reply to PEC2]

A fairly common experience - these days people become so specialised that when a patient has a more complex presentation they don't cotton on. But that chronic sinusitis is probably related.

[PEC2 in reply to PMRpro]

Also, sores in my nose which i attributed to chronic sinus issues. ( I did see an ENT for that). But... my kidney function is good!

[PMRpro Ambassador in reply to PEC2]

Which is something!!!!

[eyeBRing]

Have an identical problem. It's so four years before my vasculitis w@s found. It's attacked my kidney and it was the renal unit that found it. I have never had a rheumatologist . I hope you have a better outcome than me. I have permanent kidney damage and new sinusitis issues. Good luck

[PEC2]

I am so sorry to hear that. I will mind what you have said. Thank you and all the best.