Historically weird ANCA results

[LaurenW]

Hey there - I have historically had very weird ANCA results, so much so the doctors have just thrown them out. I haven't been able to access all of them, but I do have:

June 2014 (when I had red lumps on my legs with some that turned into ulcers, massive leg swelling and nerve pain) :

P-ANCA 65.1 (retested 3x, @ 2 labs)

C-ANCA 1:320 (ABNORMAL)

PROTEINASE-3 <1.0

* * *

June 2016 (When I was really sick with extreme fatigue, joint swelling/pain, extreme sweating in response to heat and cold, extreme sinus pain and swelling, and bladder/digest issues:

P-ANCA 7.3 (AI)

C-ANCA <1.0 (AI)

PROTEINASE-3 <1.0

I think different labs express results in slightly different formats, but I wrote them the way they were presented.

Q: Has anyone seen results that look like these, and if so, was there a diagnosis? I am currently diagnosed with Psoriatic Arthritis, Idiopathic Autoimmune(s), fibromyalgia.

Any insights would be appreciated. Thanks.

[Chris-Bromsgrove]

Hi Lauren, As far as Vasculitis is concerned a positive ANCA reading on its own isn't much help with diagnosis, as it can be associated with other autoimmune diseases as well. With ANCA associated Vasculitis a flare or relapse is usually associated with a rise in ANCA levels. You can also remain ANCA positive and remain in remission. So in that respect your ANCA readings seem a bit odd. Also with ANCA associated Vasculitis you just have one or other of the ANCA types, not both, as far as I am aware. The thing that has also confused me is I thought Protinaise 3 and C ANCA are the same thing.

Chris

[LaurenW in reply to Chris-Bromsgrove]

Hi Chris - they were listed separately, so I included them.

I was hoping that somebody else had the same weird outcomes too, and could shine a bit of light into the deep gray of my autoimmune weirdness.

These results so vexed my ex- rheumatologist, that he threw them out and got exasperated to the point that he stopped trying.

[LaurenW in reply to LaurenW]

The thing is, I seem to have the light version of so many vasculitis symptoms. I have always had terrible sinuses (x-ray editing multiple times before I was a year old, and weird transient systemic symptoms on my skin, asthma... The doctor at the time said that I might be allergic to myself, whatever that means.

Add the transient joint pain starting in my early 20s, skin plaques on my elbows an knees that it he'd like crazy an went away in two days for no reason after I had them for over ten years... I was diagnosed with psoratic arthritis finally and as an aside when the leg/lump/ulcers/nerve pain swelling thing first happened nine years ago, but they had at fuzzy guesses on what was causing the leg stuff. The first time it happened, I had been scratched on the legs by thorny bushes, and I also was very sick for about a week a few weeks before the lumps formed.

Then six years later my symptoms had a reunion tour - I was very ill again for about three weeks and the lumps came back a few weeks after that, and it started all over again, but much worse than before.

One of the weirdest things about it is that each symptom that presented almost to the day it did before on the calendar starting mid-October, like the changing season or light triggered it.