What were your initial symptoms?

[Brenviking]

Before I start I have not been diagnosed with anything other than asthma. However.....

Two years ago I was a fit 43 year old - running, cycling, kickboxing. Then I noticed I could'nt seem to fill my lungs - it got to the point where I could no longer run.

Doctors said it was asthma - they gave me an inhaler and prednisilone. Unfortunately only oral steroids offer any real relief - the inhalers have little effect. I have regularly been on prednisilone now for two years - I can no longer run and exercise takes so much effort I would sooner avoid it.

In May this year I had sinus surgery to remove polyps and open up my turbinates as I appear to have allergic rhinitis which was fuelling the asthma. I was kept in for three nights because my sats were below 90.My IgE is just over 500. In school I was the kid with the snotty nose.

The last two weeks I have been coughing up green phlegm and running a temperature as well as earache. I had to get more prednisilone out of hours.

I now avoid socialising because people can see I am getting a bit breathless. I am seeing a specialist at Wythenshawe in August and I am back at the asthma clinic tomorrow.

I know quite a few asthmatics- none of them have it like me. They even say "That's not asthma."

My GP's hav'nt been great - they are content to send you on your way with an inhaler.

The fact that whatever this is has debilitated me in such a short period of time makes me believe it is not asthma.

[Hidden]

Hi Brenviking,

Have your eosinophils ever been raised?

[Brenviking]

I will enquire at the asthma clinic tomorrow. To be honest thay probably hav'nt considered churg strauss/ vasculitis. One doctor thought my heart was failing - another said COPD.

[Hidden in reply to Brenviking]

Certainly EGPA can affect the heart. The problem is you can have very severe asthma and sinus problems without it having to be EGPA. Asthma in itself can be associated with high levels of eosinophils.

What I am hearing you say is that your Consultants haven't had much " clinical curiosity " so far and that no one is looking at your symptoms as a whole. This is probably way beyond what a GP can deal with.

You are welcome to phone or e mail the VUK helpline and either John or myself will do what we can to help.

vasculitis.org.uk/helpline

[Hidden in reply to Hidden]

Just had a thought, did they send the nasal polyps that they removed to pathology? If the polyps contain eosinophils then it makes Vasculitis more likely.

[Brenviking]

My asthma nurse said my eosinophils were normal for someone in my position.

[Hidden in reply to Brenviking]

The question is whether they are raised and whether you have any symptoms to suggest EGPA. It's a rare, complex diagnosis to make, I respectfully suggest that an asthma nurse doesn't have the knowledge or experience to comment.

[macrstq]

Did you have an ANCA blood Test? That is the main vasculitis indicator. However sometimes you can have vasculitis but it does not show in the blood. You should, if you can, visit a vasculitis specialist privately. Or talk to John Mills at Vasculitis UK. Sorry you are so unwell.

[Hidden in reply to macrstq]

Unfortunately ANCA is only associated with 3 types of Vasculitis ( there are over 18 different types ). It means very little in itself as you can get false positives as well.

It's usually negative in EGPA.

[Brenviking]

Not sure if this is connected but I have fungal nail infection on both big toe nails which has not responded to over the counter medicine. Some of my other toe nails are tippex white and I get blisters on my feet which itch and leak clear fluid.

I will discuss all this when I see the specialist on 21st of next month as I think I am flogging a dead horse with my GP.

[Brenviking]

Back on the prednisilone. For the last two years I have taken 40mg for a week every five weeks. Then it wears off. Rinse and repeat.

I have started getting a tingling/numbness in small finger of left hand and stabbing pain in right calf.

I see a specialist on 21 st of this month and I will discuss why pred is keeping me going, why I have developed ear ache and why ventolin/ qvar/fostair/symbicort/montelukast/phyllocontin offer no relief whatsoever.

[Silentcorner]

Hi there,

I hope you don't mind me posting a comment as have just read your blog. I have GPA(was called wegeners granulomatosis) with subglottic tracheal stenosis as a complication. I was initially diagnosed with post viral bronchospasm then treated by GP for a year with asthma medications I was short of breath with no relief from inhalers. I was treated at York and Hull for the stenosis when it eventually got so bad I was 90% airway obstructed. I sounded somewhat like Darth Vader!!

I did a bit of research as they didn't think there was anything else wrong with me other than the tracheal problem, but as an ex nurse I knew the vague symptoms with my ear, sinuses and numerous other symptoms were linked and I referred myself to Guri Sandhu in London at Charing Cross. He has done my surgery now for about 6 years. I was immediately referred to his colleague Prof Pusey at Hammersmith where I was diagnosed with the above vasculitis. I am ANCA negative and my blood tests are always within limits. I am currently on MMF orally and Rituximab twice a year. My initial GP just passed all my symptoms off as a coincidence but I found another one in the practice and armed with the specialist details!! I went in and got referred to Mr Sandhu and was seen almost immediately.

John Mills and his team are extremely knowledgable and helpful.

[donnak0622 in reply to Silentcorner]

Hi I know this post is a few months old but I would just like to ask you when you were treat at Hull which consultant did you see. I'm currently waiting for a dilation which is being done at Hull. It seems a lot of people are seeing Mr Sandu, do you just ask your GP to refer you and Mr Sandhu a NHS doctor. I know its important to get the correct doctor as WG is a rare disease and subglottic stenosis is also rare. I'm wondering if I should wait for my dilation until I can see Mr Sandhu. Any advice would be appreciated

[Silentcorner in reply to donnak0622]

Hi there

I was originally treated by Mr Cale who works at York District but operates at Cottingham, Hull. He didn't diagnose the Wegeners but I knew myself that something else was wrong.

My GP referred me for a second opinion on the NHS to Mr Sandhu. I got an appointment very quickly to see him down at Charing Cross. He immediately referred me to his colleague Prof Puseys team that day, so I trecked across to the Hammersmith and was seen in his lunch hour by one of his team!!!

They now run a joint Vasculitis /ENT clinic once a fortnight so I see both teams at the Hammersmith for reviews.

I have my rituximab at Chapel Allerton as it's easier and they liase.

The service they provide is outstanding. If you need seeing any sooner than your appointment they have an open policy so you just phone clinic and they bring it forward. I can't recommend them enough. Hope this helps.

[matswesslen]

My partner was diagnosed with asthma, and given numerous inhalers. He did not have asthma, he had GPA which took about seven years of continual nagging, two hospital changes to diagnose. We were patronised at all turns until one Professor made the connection. Ask for an Anca test. Good Luck

[Popeye123]

I'm sure it sounds like some sort of vasculitus I had the exactly same symptoms plus the polyp operation !!!