Anca negative but ent specialist thinks nasal and sinus problems are vasculitis. Is this possible

[elsieboo]

Was taken into hospital last year with suspected temperal arteritis. Then it was decided I wasn't the right age range. I have been on prednisone since last October. I started on 80mg and am now on 15mg daily.

[PatriciaAnn]

Yes Elsie, it is entirely possible. Many of us have not been ANCA positive at any time, some are positive some of the time and then negative. All the blood tests are guides to the consultant, they are not definitive answers. The consultant will have taken many factors into consideration. Has he done or is he going to do a biopsy?

[elsieboo]

Hi PatriciaAnn. I am waiting for a ct scan and they will decide where to do a biopsy. I am confused as my ent specialist wasn't very forthcoming about any of the nasal problems I have been having since october. I know that with the amoubt of prednisone I was expecting swelling but the Swelling on one side was alot more pronounced. I've also had problems with the sight in one eye being very blurred. Is this normal fir vasculitis?

[janieg in reply to elsieboo]

Hi elsieboo if you are getting blurred vision in your eye I would get it checked straightway. I have been diagnosed with Churg Strauss syndrome and have permanently lost sight in one eye. Time is of the essence.

[Hidden]

Hi elsieboo,

That's interesting. I had suspected temporal arteritis ( GCA ) as well but it was ruled out partly because of my age ( 47 ). I have had problems with ongoing jaw/ facial/ nose pain, headache and blurry vision. My ANCA s negative and ANA equivocal. Like you I was on high dose prednisolone, now down to 8mg with aid of methotrexate and now on Mycophenolate.

My eyelids are very swollen and I think the right side of my nose is swollen as well. I don't have a definitive dagnosis yet. These auto immune conditions are very confusing!

[PMRpro in reply to Hidden]

Have I told you this before? GCA isn't common in under 50s - but it does happen, we know of a 37 year old male and even teenagers with biopsy proven GCA.

[elsieboo]

Tell me about it I find it very frustrating as i'm 44 and just want to no what is happening to me. I am on methotrexate for psoriasis .

[AllyGY2013]

I was anca negative, then positive, now negative again. My GP actually said 'that's what we've been waiting for' when it became positive as it aided the diagnosis, they had suspected it but weren't committing to a diagnosis until then, although they were treating me with prednisolone.

My right eyelid has been slightly swollen throughout, I have sjorgrens as well as WG/GPA.

My sinuses are painful and I get facial pain. I also loose my voice regulary (3 times since just before Christmas and it sounds like it is on the way out again today - but I do have yet another cold). I had a ct scan of my sinuses which was normal.

[Rowmarsh in reply to AllyGY2013]

Your doctor doesn't understand vasculitis. The Royal Brompton Hospital told me (from a Professor) that you can be ANCA +ve or -ve and still be diagnosed with vasculitis and/or Churg Strauss Syndrome. My doctor has been indecisive for 9 years as I has always been ANCA negative. Now i have severe heart failure and heart damage because ANCA negative patients are more at risk of cardiac involvement. Moral of the tale is to go to the specialist hospitals.

[suffolkgirl]

I have WG, which damaged my nose and sinuses, but have always been ANCA negative.

[Essex-jill]

I have WG but also always been ANCA negative since diagnosis 15 years ago. Confirmed by nasal biopsy. I have Saddle nose deformity and sinus problems.

Good luck.

[seejayd]

yes it is possible!

[elsieboo]

Thank u all for your replies. Am feeling more postive now, But am also suffering from a strange throat and feeling exhausted is this usual. Sorry to b a pain. X

[Rowmarsh in reply to elsieboo]

Unfortunately and I can speak only from a Churg Strauss Syndrome point of view, tiredness, lethargy and fatigue are a real pain with the disease so much so they can debiliate your everyday life. Diet and relaxation help but generally you cannot control these side effects.

[Rowmarsh]

Yes it can be. I developed nasal crusting, loss of hearing and sinus problems after diagnosis. Also, if you are ANCA negative you are at risk of cardiac involvement. My doctor ignored this little fact for 9 years and now I have severe heart failure and damage. I would recommend a second opinion to the Royal Brompton in London they are the specialists. I have no faith in the mainstream NHS to deal with my Churg Strauss Syndrome.

[bowler]

I have all the symptoms of WG ? But my ANCA came back negative twice, chest x/ray was fine, also head nasal MRI was also Fine, I have an appointment tomorrow 7th May at the ENT clinic at Addenbrooks hospital Cambridge,

I have bleeding from the sinus's, [ not heavy ] crusty sore nose, ear ache, with loss of hearing, very bad hoarseness with loss of voice, red eye's, headache, aches and pains,

swollen feet with pins and needles, I am so lethargic, and feel unwell

I already take Prednisolone for GCA which was diagnosed 16 years ago aged 54 I'm now wondering if I don't have GCA but some other form of vasculitis or both ?

I don't know what to expect tomorrow at ENT probably a consultation then another LONG wait if they decide to do a biopsy,

[Rowmarsh]

Definitely yes! yes! and yes!

I've had Churg Strauss Syndrome since 2006 and always ANCA negative but instead of developing sinus problems in the early stages which is the norm I developed them in about 2010. Just because you are ANCA negative does not mean you do not have a serious vasculituc disease. Specialists hang their hat on this test and if it is positive they say yes you have it but if you are negative they say mmmm? Possibly.

ANCA negative patients can be prone to cardiac involvement as well. I know I now have severe cardiomyopathy related to Churg Strauss Syndrome. This was missed by my local hospital for years but diagnosed in March 2015 by the Royal Brompton Hospital in London.

Everybody is different but I just wanted to highlight to you about the importance of ANCA negative.

[jenwide70]

Does anybody live or have lived near coal ash plants, or contaimated well water?