C anca positive 40 - hospital says. Low level so not wg..still plagued by sinus trouble, dry nose etc..can i be sure? My mum died of wg

[Tinkytink]

One hospital said its positive, another says its too low to be positive..i dont undertstand the levels of tilter?

[Hidden]

WG is not known to be hereditary although there appears to be an elevated chance of developing the disease in children with a parent who develops the disease. Vasculitis is thought to be a genetically predisposed disease with an 'environmental' trigger.

Whilst a C-ANCA marker of 40 is not a definitive indicator of WG, it is perfectly possible to have the disease or some other type of vasculitis. There are no reliable biomedical markers for the suite of known vasculitis conditions and usually, a definitive diagnosis comes from looking at a combination of blood tests, symptoms and tissue biopsies.

It is possible to have a C-ANCA PR3s result of less than 3 (or the older style PR3 test of less than 7), with a titre level of less than 1 in 20 (i.e. negative) and still have active disease. The opposite is also true with some patients having a positive score but showing no apparent sign of illness. However, a positive result does mean there is evidence of antibodies associated with vasculitis or other similar auto-immune diseases.

However, who ever told you that a score of 40 is 'too low' is clearly misinformed and you should seek a clinician with experience in vasculitis without delay. If you post back with which hospital(s) you have attending it will be possible to advise you of your nearest 'tried and trusted' specialist.

Healthy wishes.

[Tinkytink in reply to Hidden]

Thank you Martin. I feel like Im going round in circles. managing my sinus pain and dryness is the major symptom and at times I feel quite ill. At other times, I seem well but always there is the sinus and nose dryness and hot pain that disrupts almost every nights sleep and which i use loads of saline washes for. The first c anca positve was from the ENT at Durham university who wanted me seen by a rheumatologist. Then I was seen by james Cook Middlesborough who did do blood tests and were very nice, but i got the feeling that he thought i was a bit neurotic because of my mums illness. They said the Elisa test was better and at 40 was very low so results were 'encouraging'. Now im back at ENT Durham, they want me to have a scan to see why my nose is still so raw and sore after a year . I should mention that my sister has even more symptoms than me, including a cyst on retina causing it to detach slightly, severe breathing problems and arthritis. But she was anca c neg so they said she is ok. My son is also ill and has been for 6 yrs..similar story, but they say it must be ME...Im fed up with illness...especially nose illness!!

[John_Mills Volunteer]

Martin has, as always, presented a very clear picture. To be honest, I think you and the other members of your family should ask for a referral to a centre who specialises in Vasculitis and other immune diseases. There is a limited choice of places where there is this level of expertise and experience, in my opinion, Dr David Jayne at Addenbrookes in Cambridge is one of the most authoritative and respected doctors in the UK. Your GP can get you a referral. If you have any problems with getting a referral please get back in touch. Martin will also agree, Addenbrookes is the best place, I am sure.

Best wishes

John

[Tinkytink]

Thank you both. Sounds like we are a bunch of hypochondriacs but we are all being treated seperatley for each issue. My sis is seeing an eye doc and also another doc who thinks she might have aspergillosis?? I just need to figure out how to get Dr jayne to see three or even one of us when we have each been to a local gp who probably thinks we are mad. maybe i should srite to his secretary to see if he thinks its worth us making the fuss first?

[Hidden]

Thank you both too I wholeheartedly echo John's advice and agree that it will probably be best to contact Dr Jayne directly as soon as possible. His details can be found at cuh.org.uk/addenbrookes/ser...

You all sound as if you need some supportive help and I'm sure David's clinic is the place you'll receive it. Don't be afraid to mention John and Vasculitis UK in your request too!

Keep us posted with how things progress please?

Very best wishes.

Martin

[Tinkytink in reply to Hidden]

Its been a long time since I posted as I feel without hope of help. Wrote to David Jayne for my sone only, and after several months and a repeated letter, still have no appt and no response. presumably his doc feels no point in referral since he has already seen docs up here who have decided its M.E?

I eventually gave up seeing the ENT as each time saw someone different and started whole story again. Im currently plagued with sinus pain that keeps me awake most nights, have now developed intermittent but quite marked blurred vision, and had two bouts of ear trouble with dizziness. head feels like a pressure cooker most days. Other than that I seem healthy. My sister however is really quite ill now and her lung function is down to 38% and is living on steroids. She is too ill to have an eye op that she needs. She has found a good doc at Freeman Newcastle who seems finally to be listening and is doing more tests so perhaps at least one of us will get sorted! My sone is also waiting for local appt for his sinus probs that cause him constant misery, nosebleeds and puffy eyes..I just hope someone somehwere will help him so we can get on with life, but currently I feel like giving up and accepting whatever we have.

[PaulBingham]

Hi TinkyTink,

I have WG for over 8 years with one relapse.

I have been told by my consultant that my Anca reading needs to be consistently below 4 and that anything higher is a bad indicator. The key is to test it frequently to see what level it is and is it increasing.

My relapse occurred 4 years ago after it rose to 15 .

My comment to you is that 40 seems very high and a very negative indicator. I would press for a Vasculitis Consultant who knows what they are doing to take a look at your situation. If no consultant with vasculitis knowledge exists at you hospital, you should insist that they refer you to someone with the necessary experience and knowledge. Awarenes and Knowledge are still not universal throughout all hospitals.

Good Luck

Paul

[Hidden]

Sadly, I've had letters to consultants at Addenbrookes go unanswered recent;y and whilst I appreciate they switched to a paperless system in October I doubt that's the reason. I suspect it's a combination of things but there are no excuses in my eyes.

The best way to access David is to speak to his secretary, Sue Reid and as her to get him to ring you, Alternately/also, email her your letters and ask her to print them off and ensure he sees them. ([e-mail]).

You clearly need someone within the medical fraternity to start listening and help you. Your case is definitely not without hope and there are other excellent clinicians at other hospitals who are accessible if Addenbrookes don't respond properly. In the meantime, if you'd like some support and advocacy please contact me privately through here and I'll give you my phone number. I'm sure John Mills at V-UK HQ will also be more than willing to help in any way he can.

Healthy wishes.

Martin