Weak Positive C-ANCA (A) ?

[leahcim]

Hello everyone, i hope you're all feeling well this is new to me so bare with me lol. I had loads of blood tests done at addenbrookes hospital recently because iv had extreme fatigue, dizziness, light-headedness, nausea etc plus being upright makes my symptoms 100 times worse and laying down makes me feel better.

I decided to get the blood test results for myself and it says on here i had a weak positive C-ANCA .

They then also done an MPO ANCA and PR3 ANCA test which were both normal, and also stated my CRP and ESR were ok. so im kind of confusded if this means anything?

[2534]

Hi Leahcim. Guess your specialist consultant will unpack all the results and what they mean. I am anca-negative and at the time thought this meant I could not get Rituximab. I got very excited when it went weak anca-positive at the next test, but apparently it doesn't mean much. However, thanks to David Jayne at Addenbrooke's I found out that I could be given Rituximab even though I am anca-negative. I also had low CPR and ESR right the way through. But I am told that can be a genetic thing and does not necessarily mean you don't have an autoimmune or inflammatory condition. I think you are in the best place so that's a blessing.

[leahcim in reply to 2534]

Oooo. May I ask what symptoms etc you have please?

[2534 in reply to leahcim]

I have feet, and then later feet and lower legs, which get hot and prickly when they are vertical including sitting normally in a chair and also when the temperature becomes too high. So I need to elevate them and keep them cool. I have nerve vasculitis and erythromelalgia or burning feet syndrome. The latter is secondary to the vasculitis and is very rare so I think it would be unlikely that you had erythromelalgia as well.

There is also something in your dizziness, light-headedness and symptoms worsening when lying down that makes me wonder if you could explore whether you had autonomic disorder. I am sure there would be a consultant at Addenbrooke's that would know about that. Best wishes

[leahcim in reply to 2534]

do you get any dizziness, lightheadedness etc when your upright because of ur legs?

[2534 in reply to leahcim]

Sorry for late response I have been in hospital No, personally I don't get dizzy/light headed. Could be postural hypotension or autonomic disorder. Take care

[sm15 in reply to leahcim]

Hi! I have just got my blood tests done at Addenbrookes and the results are the same as yours. A weak positive c-ANCA but negative MPO ANCA and PR3 ANCA. Would you please share what the doctors have to say about your diagnosis?

[Suzym2u Moderator Vasculitis UK]

You could have postural hypotension there could be various causes for this but it needs investingating.

[sm15]

Hi! I had my blood tests done at Addenbrookes and had the same result as yours. A weak positive c-ANCA and negative MPO ANCA and PR3 ANCA. Would you please share what the doctors had said regarding your diagnosis?

[Reddy143]

Hey leahcim,

I hope you are doing well. So what's the update from rheumatologist about your current situation ? Are you started any medication . Even I was diagolised with weakly positive with C - ANCA with noose bleed symptoms.

[Canygirl61]

Hi,

I am still awaiting diagnosis. I tested positive c-ANCA twice, but negative protenase 3, and MPO. Had slightly elevated c-reactive protein, but negative sed rate. My symptoms are primarily chronic headaches (varying in intensity) and dizziness. I met with Dr Robert Spiera last week, who lead the clinical trials for Rituxan use for Wegeners. He is reviewing my medical charts and notes from neurologist. His initial thought is that I have Central Nervous System vasculitis. He is re-checking my ANCAs, along with several other blood tests. According to all the doctors I’ve met, I’m an unusual case, in that my presentation is not typical. I occasionally get a strange sensation in my lower legs into my feet, like they’re cold and numb/tingling— difficult to describe. I cannot lay flat whatsoever, and have difficulty sleeping. I also suffer from debilitating positional vertigo. I live in the US. Not sure if any of my story helps. Keep us posted on your progress.

Claire

[Laurentgib]

Dear all

I have also c-anca positive negative mpo and P3 results no CRP and inflammatory markers normal but had lightheadness for two years and cold feet tingling the kegs when I lay flat and very abnormal tiredness. Also has some unexplained cardiac acute inflammation for last 9 months (myocarditis). My symptoms seem to correspond to some symptoms described above except cardiac ones.

I live in the UK do you know any specialist centre / specialist on auto immune disorders vascularitis

All the best

Laurent