anyone here in new york or usa dealing with anca positive? I feel so lost my doctor referred me to a reumatologist the appointment is in 2 months but i am so scared. i had the urinalysis and the rest of my blood work is excellent, it all started with a rash when i went to see my dermatologist he said it was urticaria they did a skin biopsy and the results where vasculitis. then he did more blood work that's when the anca positive came up he said i needed to see my regular doctor so i can get a referral for a reumatologist but in the papers he gave me he stated that the doctor should evaluate me for wegener's granulomatosis. so i did my own research online and know i am terrified so scared don't know what to expect. i don't ay of the symptoms i do have back pain and the rash which apparently is urticaria i have suffer from sinusitis almost all my life and migraines as well but other than that am a healthy person i started suffering from back pain when i had my first child and it got worse when i started working in an office 2 years ago but my doctor says that the reason could be because i am overweight and i don't exercise and on top of that my work that is sitting down. any help here anybody i need some answer to feel better my doctor says that only on blood work they cannot give an diagnosis and that he thinks that its only an urticaria vasculitis. but he also says that my results for the anca are just to low he said like just crossing the border line and that it could even be a mistake. he said that the reumatologist will do ore blood work and determine what treatment i will have to have.

19 Replies

  • Hey please don't worry .......rheumatologist is the best person to see for GPA, I have GPA and 30 yrs ago I had PAN both vasculitis....i;'m 54 and still living a perfectly normal life......

  • Is so good to hear story like this because everything on the Internet is so scary when you tried to look for information. Thanks for replying god bless you with many many more years filled with health stay safe.

  • Have you had cyclophosphamide please as that is my next step.

    To the poster. An ANCA positive test alone is not enough to give a diagnosis. I'm afraid that, I assume you are in the UK,? , you will need many more tests. From my experience and reading others this group of diseases are very hard to diagnose. I have what the doctors call episodes of RIGOR. I heat up to 104 and yet feel freezing cold and cannot get warm. I shake so violently that trying to hold even a plastic bottle to take a drink is near impossible. I have fatigue I just cannot articulate and joint pain that opioids and fentanyl have not helped. I am on immunosuppressive drugs, azathioprine and steroid in prednisolone. I have a heart rate that is now over 100 on a normal day and cough blood every time I get these attacks.

    Please don't get ahead of yourself and do what I did which is to Google the disease as all it did was make me more fearful and worse. Please let the specialists do their job. As far as I know Wegeners does not produce rashes but other forms of vasculitis do.

    I am reluctantly starting on cyclophosphamide next month after fighting it for over around 18 months because googling thevside effects had me terrified. I have now been hospitalised 5 times in less than a year so I am biting the bullet and going ahead with the treatment. I am 53, 54 in October. I have Crohn's disease too and a chronic back condition that has had me in tears many times.

    Please just stop the web searches and post here or on the Facebook page vasculitis uk support group. You will get answers from people who have real experience and will get a lot of good information and support.

    Wishing you all the very best and good luck

  • In 1981 when i had PAN there was no other remedy other than steroids and imuran......since i have had GPA 3 yrs ago i have had rituximab x3 helps to reduce your steroids......and i have not had any side effects.....i just find it difficult to get off the steroids as i relapse and have to increase my steorids ......

  • I believe the protocol in the UK is that we HAVE to do cyclophosphamide first & prove that is hasn't helped before we can even talk of Rituximab. If I had the money I would go private and staight to Rituximab. I have an awful gut feeling about the cyclophosphamide and I've learned my gut feel has often been right. I just don't know why it plays on my mind so much ? I think it's probably because I am on my own. I have an ex that now visits more frequently and saved my life early January. I was burning up, hallucinating, when I tried to stand I kept falling and fell downstairs. I was ambulanced into hospital from my GP surgery just last week. I've never seen my GP and nurses go so pale. The irony was the attack was the night before. They wouldn't allow me home to get some clothes and a toothbrushes

  • i was given rituixmab in the middle east (qatar).....i am currently in Spain and havent had it for over a year...i planon going back to the uk sometime this year so i am not sure how this will work out for me.....

  • Hi Yoselin1006, I had a rash like you say you have. I went to a Rhumatoligist and he is the one who diagnosed me with Panca Vasculitis. I had the rash for 5 years before I was diagnosed. Don't worry the Rhumatoligist will order blood work and a urinalysis sample to test you for Vasculitis. Maybe even a biopsy. I had a biopsy of my kidneys. They showed protein in them though.

    I to suffered from sinus infections for many years. I even had sinus surgery in 2014 to help with the infections. It has helped me some but I am on an allergy pill ever since. Last year I had 3 really bad sinus infections. I am doing ok as for now though.

    I got so bad with the inflammation that I couldn't use my hands, or hardly walk. I also have Rhumatoid, osteoarthritis and glomerulonephritis. My Vasculitis is in my small and medium vessels. So far I have had 5 chemotherapy treatment infusions for it but it didn't put it in remission. I am still on prednisone and a pain pill, because of the inflammation in my body. They are talking about giving me another infusion because the pill Azathioprine he tried me on made me worse. I dread taking more chemotherapy treatments though. I don't ever feel good anymore. I'm always in pain. I was told I will never get any better by my Rhumatoligist. I just pray to God to help me through each day. God Bless You and try not to worry. Oh by the way I am a woman 64 years old and live in Ky. Please let me know how everything turns out for you.

  • I also suffer from the chronic joint pains and it sounds exactly the same as you explain. I find an intramuscular injection of prednisolone helps me a great deal on that front. Please ask your doctor if he is prepared to try you on it. In the U.K. It's called depomedrone but neodrol in the USA. I have 120 mg when I really need it and it has such a dramatic effect that I call it my angel injection. I get so bad that I cannot hold a cup and I can barely walk with all the major joints affected. I hope this may help you. It's been a god send for me yet it was given me for Crohn's disease. It takes around 2-3 days to be fully effective for me but the difference is light and day

    God bless and keep you

  • The most important thing is to get proper treatment as early as possible as that will decrease the chance of lasting damage. Have you contacted the vasculitis foundation in the US? They should be able to give you advice regarding the best rheumatologist in your area for the treatment of vasculitis (not all rheumatologists have the specialist knowledge required for treating effectively). try not to worry too much as vasculitis - if that is what you have - affects us all differently and you may well have a mild form which responds well to the medication. I've had GPA for 17 years and still going strong!

  • Thanks for replying is to know that we are not olonehope you stay safe and live a long healthy life.

  • I have had a positive ANCA for 10+ years and was completely symptom free apart from a moderate ulcerative colitis. Regular blood work and urinalysis is important. When you see the rheumatologist, other tests may be carried out (24 urine, ultrasound, biopsies) to establish if you are experiencing a flare. But in the mean time, I wouldn't panic. Mostly, things move slowly. Incl. remission.

    I personally don't see a relationship between your back pain and vasculitis apart from maybe stress and issues with posture/stance. I would encourage you to see a physio for advice on how to tackle it with improved seating and exercises. Also, stress reduction in whatever shape and form would be a great investment. You don't want too much other health issues get in the way of dealing with vasculitis.

  • Thanks for replying its good to know we are not alone speacially on this rare disease. God bless you staysafe.

  • Surely you must know the the 2 forms of IBD can cause us to have awful joint pain. I was first diagnosed with UC and thi can cause positive ANCA readings in itself but I go to IBD clinic monthly and have lost count of the amounts of people who also suffer chronic joint pain & spondylitis. Vasculitis can also do the same. There is a lot of evidence to show the inflammation can cause such terrible pain. Maybe you are one of the lucky ones and god bless you if you are. I am now reluctantly starting the cyclophosphamide next month as I thought it woukd clear up but after 5 being blue lighted into hospital 5 times in a relatively short time I feel I have no real choice.

    Wishing you continued lack of joint pain

  • Oh Jools, this sounds awful. I hope the cyclophosphamide will help. I have had a few episodes of inflamed joints (knees, ankles) which thankfully cleared up rapidly. Very painful. I have also had several years of repeat inflammations in my eyes - one at a time, which only responded to cortisone drops. Since my first diagnosis I have developed GPA mainly in my inner ears and sinus, but in the last year, all my finger joints and a few toe joints have become inflamed and are deforming ever so slightly. I just had my third round of rituximab (monoclonal antibody) treatment and this keeps in it check, sort of.

    All the best.

  • Thank you. I guess that if the apparent vasculitis was the only thing I had to deal with then I'd feel more up to the fight but the last 15 years have seen me diagnosed with 4 chronic conditions. In all honesty I don't know if i am up to the battle. I do see it very much as battle too. I'm still recovering from spine surgery. It's all made me feel very overwhelmed

  • Same here. I hope you find comfort and when necessary, good distraction. I am slowly starting to contemplate (being "encouraged" to give up my job - on sick leave since xmas.

  • That's the hardest thing is not being able to work & especially with the judgment on people receiving benefits. I wish the woukd change the name tonassistance instead of benefits. There is no benefit involved when living hand to mouth.

    Good luck and god bless you

  • I moved to NJ because I couldn't find a doctor in Florida to take care of me. I know that Dr. Spiera in Manhattan specializes in this disease. I have an appointment on Wednesday. As far as I know there are 10 vasculitis specialists in the US. Another one is Dr. Stone at Mass General. Good luck to you. I have also been to the Mayo Clinic in Rochester.

  • Thanks so much were can i get or have to call to get an appointment with him since i have not seen any rheumatologist yet and do you know if they take most coverage insurance?

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