In need of some advice! ANCA positive and sinus infections? Could it possibly be vasculitis?

[lc24]

In need of some advice again, been really unwell for a long time now, I have low B12, peripheral neuropathy (I have had 5 loading doses of B12 as neurologist said peripheral neuropathy was likely due to my b12 deficiency) low iron, I currently have UTI infection, which has been treated with two lots of antibiotics and now have a sinus infection. When my neurologist ran bloods I came back ANCA positive, but my GP says its highly unlikely based on the other blood tests that I have anything to worry about. I worry as always struggling with Sinusitis and don't seem to be getting anywhere, not been referred to ENT, what do you have to do to get a referral I keep getting 'no' by GP. I also now have raynards too, which I haven't ever experienced before. This is the short story. When sinus issues are caused by vasculitis do people get congestion/cold/flu symptoms, cough etc?

[Katie18]

Hi I have churg Strauss Vasculitis and suffered with sinititus, lots of sneezing allergies, cold and flu symptoms. Signs of Vasculitis were picked up in an allergy clinic at hospital when my GP referred me to a respiratory consultant who did a blood test and the allergy markers were sky high. I then went on to develop asthma as an adult which is a sign of churg Strauss. Hope that helps - best of luck

[Jeffo]

Hi Ic24,

3 - 4 years ago after a winter cold (a nasty virus at the time) I started suffering chronic nasal congestion, sleepless nights (literally), painful sinuses a cough which was put down to post nasal drip etc. Was feeling lousy for weeks and nothing helped not even antibiotics. My GP diagnosed everything from rhinitis to anxiety state. With a great deal of pressure I managed to get a referral to ENT. Immediately the Consultant requested bloods ANCA and PR3. Whilst my ANCA was negligible, the PR3 was positive. Biopsy 2 weeks later was ok (no giant cells found). I was diagnosed as Wegeners Granulomatosis and referred on. I must say that had it not been for this ENT consultant, I really don't know where I would be today. My current diagnosis is GPA / vasculitis and I have a fantastic Rheumatologist who specialises in vasculitis.

I would say to you DON'T ASK YOUR GP....DEMAND A REFERRAL. It's your life. Hope all works out.

[Mooka]

My sinus infections also go onto my lungs and I end up with both sinus and chest infections. If I don't take antibiotics in time then I end up with a fever and feel really ill. In my experience many ENT doctors don't know much about vasculitis so you would need a referral to an ENT doctor that does.

I would ask why they tested you ANCA if they don't suspect vasculitis.

Good luck - I hope you get some answers soon.

[lc24 in reply to Mooka]

It was my neurologist that tested my ANCA, so guess he wanted to rule it out for my peripheral neuropathy. My neurologist has sent letter to GP before the bloods came back instructing to inject B12 as he thought it was likely cause of my issues. So it was unrelated to my reoccuring sinusitis. I am coughing up think yellow phlem (sorry gross I know) too, so suspect its also a chest infection too. My Gp has just ignored the ANCA result saying its highly unlikely to be that and I haven't heard from my neurologist. He wrote the letter on the day I saw him it just took 2 1/2 weeks to send, so didn't include my results? I think the test was done in southmead hospital in Bristol and they ran a few other tests with it, that he said came back low normal?

[Mooka]

The rheumatologist that I was under at the time also told me my positive ANCA was irrelevant a few months before I started treatment for MPA! He has a clinical interest in vasculitis so maybe your GP could be wrong too? If your neurologist did an ANCA test I suspect he was considering vasculitis as a cause of your peripheral neuropathy. if you don't have another appointment with him shortly could you phone his secretary and ask if he is going to follow up the positive test? If he wrote the letter on the same day as your appointment he wouldn't have had the ANCA results back when he wrote it. An ANCA positive result on its own isn't proof that you do have vasculitis, but if vas is the cause of your sinus and peripheral neuropathy it could be doing permanent damage.

I know its overwhelming to be pushy with doctors but you need to have vasculitis ruled in or out of your life. Perhaps try a different GP in the practice?

[PattyMPA]

I have learned that the ANCA titre is what is irrelevant as it does not seem to correspond to disease severity.

[Deedrah]

Same experience! Fight for a referral to a Dr. that specializes inn vasculitis. A lot of time was wasted with misdiagnosis and resulted in unnecessary damage to my kidneys, lungs, etc...I fought with my insurance company to see a doctor who was knowledgeable. I just wish I would have known sooner.

[PattyMPA]

I also learned that ANCA is a narrowing down to a few types of vasculites, then whether P or C is more specific and whether MPO or PR3 further defines which vasculitis to a 95% certainty. The biopsy may be too invasuve and unnecessary because you would get the same immediately urgent medical intervention to try to induce the ANCA Associated Vasculitis into remission..no matter which one. And that medication is determined then by area and extent of damage. Then there us time to sort out other details once the infection/inflammation are subsiding.

It seems to me that it has been initially a literal battle for my life: Prednisone fighting off my own self attacking immune system. And now adding Methotrexate. My titer wasn't important, but it was 1:128.

Learning that helped me have a comfort level with how my doctor decided on treatment and without waiting a second.