ANCA and ANA positive

[happyp]

I've been ill for about 8 years, recently we've been leaning towards lupus. My ANA is 1:1280 and has been for a while, but I'm told my ANCA is now weakly positive? I'm not really sure what this means. Symptom wise I get rashes, severe joint pain, pain while breathing and breathlessness, oral and nasal ulcers, dry eyes, tinnitis and vertigo, fatigue. My flares normally start with very painful nasal sores, some ulcers, severe rhinitis and flu like symptoms (so I'm always wondering if I have the flu or not) and then I'll be hit by chest/pleuretic pain while breathing and severe joint pains. And i'll be so tired i'll struggle to even walk at all. I also get rashes on my face and arms. (and I have a history of preterm labour and neonatal death) the last 12-18 months I've been getting unexplained blood and protein in my urine during flares. But apart from my ANA and now the ANCA, my bloods are mostly fine. Since the ANCA is only weakly positive could it be a false positive, or not significant? I don't know anything more about the ANCA, because it's just my preliminary results, there are still some to come back. And I'm 15 weeks pregnant

Thanks for your help

[bowler]

Hi

I am waiting for test to be done re my symptoms similar to yours, but they think mine could be Wengeners Granulomatosis ? my ANCA came back negative although I understand this does happen, and only a biopsy will confirm it. Some of these Vasculitis problems have the same symptoms which is confusing, so must be hard to diagnose.

Good luck with your pregnancy.

[Suzym2u Moderator Vasculitis UK]

Which hospital do you attend happyp? if yo don't mind me asking

Susan

[happyp in reply to Suzym2u]

I go to Glan Clywd or Ysbyty Gwynedd. I saw a new rheumy a couple of weeks back (who ordered the ANCA test) who was ready to just write me off as unknown and leave it at that. I don't know if this changes things, but one would hope further investigation would be necessary.

[Suzym2u Moderator Vasculitis UK in reply to happyp]

I should hope further investigations are planned, have you heard from the hospital at all?

[AndrewT]

Dear happyp,

I'm afraid that I'm not going to be much help here-nothing like saying it like it is, is there! I do have one, or two, observations that might help you though. The first is, almost certainly, the most obvious and that is that you are pregnant-congratulations, by the way. This will inevitably 'stress', your body, in ways that are unique to pregnancy-quite how this will effect your vasculitis if, this is, in fact what you have. I know that all 'auto-immune' conditions are, in many ways, similar but, unfortunately for us all, they are all also very different. If this sounds a bit (bit???) contradictory then, I'm afraid, that that is the nature of the beast. I personally wouldn't worry, too much anyway, whether, or not, I was ANCA positive or not. So long as your doctors/consultants are aware and accept, your condition, then, dare I say, hopefully you will receive the right treatment. I must confess that I know nothing, at all, about Welsh hospitals-except that they are in wales (yes right, great observation there Andrew....). One thought before I close this 'discussion'. We, this 'forum', will NEVER EVER 'right you off' and that is an absolute, cast iron promise. I can, and do, mean this from the bottom of our collective hearts. I hope his has helped a bit, if only, to re-assure you that you are definitely not alone.

Once again congratulations.

Love, and best wishes.

AndrewT