ANCA POSITIVE : I FIRST HAD A RASH I WENT TO A... - Vasculitis UK

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ANCA POSITIVE

YOSELIN1006 profile image
13 Replies

I FIRST HAD A RASH I WENT TO A DERMATOLOGIST AND SAID THAT IT WAS URTICARIA HAD A SKIN BIOPSY AND MORE BLOOD WORK AND CAME OUT IN BIOPSY THAT IT WAS VASCULITIS THEN MY RESULTS FOR THE BLOOD WERE POSITIVE ANCA. THEY SEND ME TO MY REGULAR DOCTOR FOR EVALUATION AND TO A REUMATOLOGIST I AM FREAKING OUT I DON'T HAVE ANY SYMPTOMS OF ANY FATIGUE OR EAR PAIN I BREATH PERFECTLY I DON'T HAVE WEIGHT LOST AND I SLEEP PERFECTLY FINE I DO GET BACK PAIN A LOT WHEN I STRETCH AND SOMETIMES MY ELBOWS HURT I HAVE HAD IN THE PAST SINUSITIS THAT COME AND GOES EVEN FOR YEARS ANY ADVICE ANY ONE? I AM REALLY SCARED BECAUSE THE DOCTOR DID NOT REALLY EXPLAIN ANYTHING AND THE INTERNET INFO IS JUST NOT GOOD ITS SCARY

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Suzym2u profile image
Suzym2uModeratorVasculitis UK

Where are you seen for your vasculitis?

YOSELIN1006 profile image
YOSELIN1006 in reply toSuzym2u

Hi i live in new York the bronx

My doctor said to me yesterday that he did not see it necessary to send me to arheumatologist now because i dont have any symptoms and i have always suffer from sinusitis thats nothing new. But he said that the levels on my antibodies where just to low to give a diagnosed so he did a urine test and some more bloodwork because he said i was missing some test and i have to go next week for those results. Then in 2 month he will repeat the test to see how is my anca levels.

Tinkytink profile image
Tinkytink

Hi yoselin don't panic. If you are pretty much symptom free it may well lead nowhere. I also had positive c anca after lots of health problems repeated sinus difficulties ...and yet still the specialist said it was unlikely to mean anything. So dont get too worked up...wait and see what doc says. Hope it goes well.

YOSELIN1006 profile image
YOSELIN1006 in reply toTinkytink

Thank you so much yeah i have always suffer from sinusitis it goes and comes back but nothing else thanks god. Stay safe best of luck to you. And thaks for replying.

Juneelizabeth profile image
Juneelizabeth

Dear Yoselin

Your symptoms are a heads up especially if you are younger than 40 that you probably have a genetic predisposition to vasculitis illnesses

I had Urticaria over 40 years ago when very little was known about Vasculitis illnesses .I was just given antihistamines

It came and went but usually was brought on by stress

Throughout my life which until the past few years has been active and full I've had periods of mysterious illnesses which now with current medical knowledge could be classified as Fybromyalgia PMR ?Lupus and now GCA.

This does not mean you will develop anything like that but your episode of urticaria is a heads up that you need to try to live a pretty healthy life taking care to reduce stress

Eat a good immune boosting diet with lots of fresh veg fruit good quality protein and try to avoid fast food and processed foods

Make sure you get enough vitamins and supplements

Take exercise you enjoy regularly

If you can do all these things you make prevent any future vasculitis type illnesses

My mistake was I didn't follow as good a diet as I could have as I was a very hard working mum my life was very stressful and I had a very stressful marriage

Good Luck

June

YOSELIN1006 profile image
YOSELIN1006 in reply toJuneelizabeth

Thank you so much for replying yeah am 31 now its actually the first time i had an urticaria he gave me predisone for it it went away completely after a month or so i get like one little rash and in 24 hours it disappears i was so afraid with this results but i dont really feel anything i have to kids as well so i do get a lot of stress and don rest properly but i have change completely my eating habbits. Best of luck to you always have faith in god.

Juneelizabeth profile image
Juneelizabeth

Oh and BTW I've been anca positive as well

June

Hi Yoselin,

I've been ANCA positive for over ten quite fit and healthy years before the symptoms got serious. Best to remain aware of it and mention it any time you need to see a doctor for whatever reason (mine eventually included hearing loss and vertigo). Also, lab tests every once in a while (liver, kidney, inflammation markers) and the occasional lung function test can help you to stay on the safe side.

And of course, stress reduction and healthy diet . . .

Look after yourself.

YOSELIN1006 profile image
YOSELIN1006 in reply to

Thank you so much for your reply i went to my doc yesterday and he said that he did not see it necessary for him to send me to a rheumatologist because i look healthy and dont present any symptoms and the levels of the antibodies where just yo low like crossings the border line just a tiny bit so he said that in two monthshe would repeat the test i am still concerned because the internet information in not so good but i have so much faith in god that everything is hoing to be fine i have already changed my eating habits a month ago and doing many home remedies am positive that i will live a long healthy life. Stay safe and best of luck to you.

That sounds good. But regarding home remedies, remember that a positive ANCA does indicate a potential future autoimmune scenario, i.e. your immune system can go into "overdrive". This should be considered when you may follow well meaning but often ignorant advice on home remedies designed to "boost/strengthen" your immune system. That's definitely not what you need and I strongly advice you to always seek your rheumatologist's opinion beforehand, even if it's "only" herbal.

YOSELIN1006 profile image
YOSELIN1006 in reply to

Yess your rite i will definitely see my rheumatology i want to be on the safe side always. And live a long life offcourse. Thank you

deebeau profile image
deebeau

Go to a Vasculitis web site to learn more about your condition. That's what I did when I was first diagnosed with Vasculitis. It really helps you understand all the different kinds of Vasculitis and symptoms. Good luck and God Bless You. I have Panca Vasculitis it is in my small and medium blood vessels. It can damage any of your organs.. I had a kidney biopsy done when I was first diagnosed and it came back with protein in them. So the Rhumatoligist put me on 20 ml. of prednisone. I also had a rash when I went to the Rhumatoligist. I was diagnosed with Vasculitis, Rhumatoid, and osteoarthritis. I am constantly in pain. I have had a lot of sinus infections which they don't know if the Vasculitis is in them or not. I go back to my Rhumatoligist on the 20th of this month hopefully I'll find out something then. I also had chemotherapy treatments last year to put it in remission, but it didn't . The Doctor said it put my Rhumatoid in remission but I don't think it did, because I couldn't come down to a lower dose of prednisone or my pain medication. I still get flare ups every so often. When I do they raise my dose of prednisone. I just pray that God will help me each and every day to cope and deal with my condition. Sorry to go on about myself. I hope you have a Blessed day. I live in Lexington Kentucky and have had a very hard time finding a good Rhumatoligist. I don't know about where you live and how you can find a good Rhumatoligist.

YOSELIN1006 profile image
YOSELIN1006

Thank you so much for replying i really hope you can find someone that can help you get better am new at this and its really scary i went to my doctor yesterday i first had a urticaria rash wich they did a biopsy and they said that it was vasculitis. So they did more blood work and it stated that i had P Anca positive my doctor says it is to low that its a weak positive i dont have any of the symptoms. I have suffer from sinusitis for years goes and comes back, back pain since i had my kids. My only symptom is the joint pain i get sometimes but i read that you can be anca positive and have rheumatoid artritis or just have urticaria vasculitis and be anca positive, because rite now thaks god i dont suffer from caufing up blood or loss of a petite, or ear pain i actually have neger gotten an ear infection. I hope with the love of god that everything is going to be just fine. I pray to god everyday for me and everyone else to give us strength to fight this and that we could live a normal life with faith anything is possible. Best of luck to you god blessed you.

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