Positive ANCA

**Flint** · 02-24-2015, 05:37 PM

Hello.,

I've been posting on a vasculitis forum. I have positive ANCA., and positve ANA.
I received this positive., right before I was leaving my state (NY) - where my medical insurance is.. to come to Florida (where I do not have insurance)- I was not diagnosed with anything.. and I was given steroids. I was only give the ANCA test.. after I personally realized (not the doctors).. that.. something was wrong with my veins. At first I thought it was arthritis.. but then I figured out it was different. As if someone was sitting on my arm. Anyway., I'm curious what Wegeners is. I have not been diagnosed with this.. and I can not go to the doctor right now.. until I return to NY. All I know.. is.. this feels serious. I'm afraid. I think it may be Wegeners.. and don't even know what that means.. or what danger I am in (especially if I am not going to the doctor right now- but.. I am taking steroids that are being mailed to me.. but I am still in pain.. with headaches.. and other bizarre things.......

**LisaMac** · 02-24-2015, 06:06 PM

Describe your bizarre symptoms. Wegeners symptoms usually seem unrelated but, because it causes inflammation to the small and medium sized vessels, it affects many random things. It's good you're on Prednisone, what dose? Most of us have sinus, ear, airway, lung, eye and kidney problems...eventually. Unfortunately we seldom have the same early symptoms. Often we get sinus infections that don't clear up with antibiotics, but again, we are all different. Throw out some of your specific symptoms and let's see what happens.

**mishb** · 02-24-2015, 07:13 PM

Hi Flint and welcome.

I also have positive ANCA and positive ANA

I have WG and MCTD. If your symptoms are bizarre, you may also have Mixed Connective Tissue Disease.
This is where you have many symptoms such as Lupus, Rheumatoid Arthritis, Raynauds, but they can't pinpoint it to one specific condition.

I would be interested to hear what symptoms you are having, and as Lisa said, lets see what happens.

**Flint** · 02-25-2015, 10:11 AM

Hi Everybody., Thanks. You know.. when this first started.. I panicked. My foot swelled up., and I suddenly had "asthma"- I was told I twisted my ankle., (which I didn't)- The reason I panicked.. was not any of these. It was because it felt like someone was sitting on my arm. Actually.. I felt like I was dying, actually., literally. After my foot swelled up <for about a month it was swollen> The "pressure" moved up my leg.. and actually was all over my body. Tingling. I felt like I was "fading away"- I really couldn't move. I actually felt pain in my chest., and trouble breathing. I was "laying around"- Never mind the pain.., moving all around my body. I felt like I was getting randomly "punched"- I could hardly walk up the stairs.. or carry anything. I'm normally very strong., and usually a waitress. I figured out it was my veins. At first I thought it was "arthritis". I looked up somethings., and actually asked a doctor to take some tests <for vascular stuff>- turns out I was positive ANCA. Honestly.. I didn't understand the extent of it <of what that means.. I still don't> I also was ANA positve. The Rheum Doc was not concerned whatsoever about the pos ANCA., and said I had fibromyalgia., and maybe was depressed.. <I wasn't> I definitely was scared.. and still am.. because...... what I really felt was..... like I was dying. I've only admitted that to a few people (one or two)- and the truth it.. I think that's what it is. I still think that's what it is. I was especially scared cause I knew the doctor was useless & it took me 3mths to get to her. What happened was.. I spend from June to Dec.. eventually I went to another Rheum Doc who said "Did anyone tell you... you have a positive ANCA?"- By then.. I was planning to come for Florida. I am not covered in Florida (I'm here now)- He said "I need to see you more to figure out what's going on. He said "If you want go to Florida.. take these steroids, keep in touch., I'll see you when you get back"- So.. now I'm in Florida uncovered. My eyes feel pressure (sometimes water, goop, pain)- My ears hurt sometimes. Mostly I have a headache (since June)- I do cough phlegm. I have bruises which appear randomly (and usually hurt)- afterward.. there is often a dent left behind (like something was degenerated)- I have dents appearing in my wrists., and on the top of my hand. Pain in my wrists.. and hands.. I usually have pain going on somewhere. (like charlie horses.. and someone's kicking me)- I'm mostly exhausted. I used to walk 3 miles a day. Ride a bike. Now I go to the store.. clean a few things.. etc.. and I take a nap.. or just lay & stare for a while. I'm not working. I have a little money saved., but I have no idea what to do about the future. I forget stuff.,. and I'm very foggy. I also have red spots.. or flushing., and veins showing., and some edema. If I lean on something it leaves a deepish dent for like 10 minutes. Honestly., altho I freaked out in the beginning. I'm still scared & sad., but.. I feel.. like.. I powerless kinda now. I'm almost too tired to do anything about it anymore. I keep it to myself. My family really has no idea what I've read about it. I don't want them to worry. I don't want to worry. I would like to be in denial.. but it's hard.. because it's in my face. I'm 45.. and was always a strong person.

**Dirty Don** · 02-26-2015, 04:03 AM

Hi Flint and welcome. Yes, it sounds/looks like some form of an AI for sure, maybe WG. The steroids are nasty but necessary to knock down the symptoms at first...should be pretty strong and they have their own symptoms such as rashes and swelling. FM and depression are frequent dxs early on with WG. Roaming pain is definite and common. Aaaannnnd, you need to get home to your insurance docs...preferably WG/AI docs who know what they're doing. Also, you need to include your family in this, not deny them even tho they won't understand at first...give them a chance to understand and possibly help out. This is/can be a long process and that's what this forum is here for...to help/explain/commiserate/vent...and so on. Keep letting us all know what's up and ask many many questions. Best to you.

**mrtmeo** · 02-26-2015, 06:38 AM

Hi Flint,
Your symptoms do sound like vasculitis and you should not let this go.
A urinalysis and cmp can show if you have kidney involvement and if so, they can do a biopsy to confirm.
Vasculitis is a life threatening disease when organs become involved and organs can fail in just a few months.
Please don't ignore your symptoms and see if there is a way to get a diagnosis asap.
Your swelling sounds like pitting edema and is common in weg's and MPA (Microscopic Polyangiitis).
P-anca positive typically relates to MPA
C-anca positive typically relates to weg's aka GPA(Granulomatosis with Polyangiitis)

For more info, contact the Vasculitis Foundation. Maybe they would know if you could get your insurance coverage transfered to FL.
Contact Us

**LisaMac** · 02-27-2015, 03:30 AM

How much longer will you be in Fl?

**annekat** · 02-27-2015, 04:32 AM

Good morning, Flint! I know what you mean about the nonchalance of doctors. I ran into it before dx and I still do. My doc didn't think I had WG because I had a barely positive ANCA, while other docs thought I did, and a nasal biopsy finally proved that I did. The only one in my group of docs who was willing to treat WG was the resistant one, and I still feel he is nonchalant and dismissive of things I bring up, and like you, I have to learn most of what I know either here on the forum or on the internet. And we have to be careful about the internet. But where else do we go? I could go to a more qualified doc and I'm sure everyone on here thinks I should. But I'd have to travel some distance, am single and low income, and have double vision when I drive, all kinds of excuses, but the truth is I am fortunately doing very well with the treatment I've gotten, despite the questionable doc. Not everyone is that lucky. Still, I'm getting names of other docs together in case things turn for the worse, and should get established with one of them in advance of that. You will read many stories on here of where people get treatment and how it goes for them. Reading the stories of others is a great way to get familiar with the ins and outs of having vasculitis, if that's what you have, and it will help make sense of what you read elsewhere. I am probably also a member of the vasculitis group you belong to on Facebook, as I belong to several of them, and they are good, too.

I realize you are on steroids, and that is good, whether you have vasculitis or some other inflammatory condition. If you have vasculitis or one of the other AI diseases, you need to additionally be on meds that specifically suppress the immune system, where pred mainly targets inflammation. You've probably read about these meds in your research..... cyclophosphamide (CTX), methotrexate MTX), rituximab (RTX), and some others. If you are only in Florida for a month and only on steroids, you may be OK, as many of us went a couple years or more with symptoms before dx and treatment. But given the way you feel, it seems like taking a chance, and I guess if something really serious happens you will end up in the ER unless you can find someone to treat you there. And when you get back to NY, you need a doc in your corner who will take you seriously and really find out what is going on. There should be some of those in that state and in FL, too! All I can say, I guess, is good luck, and keep us posted!

**Dirty Don** · 02-27-2015, 05:23 AM

Flint, my intention here is to scare you into action: I literally 'died' when I assumed I was sick but could power thru it like I have everything else in my life...NOT...lungs were shattered glass, mucous filled sinuses, bruises all over, rashes to boot, wasn't breathing well (duh), taking Ibuprofen like it was candy...body just said enough is enough, went to ER, was put into coma cuz body couldn't sustain for 10 days, then a very long dx/rehab/recovery period. I am good today (in a relative sense!), was a lucky one in the long run...but my putting off what was fairly obvious probably cost me a few moments of a longer life and, for that matter, life at all. Sheesh...DO NOT put this off...please...