Vasculitis UK
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2 months down the line :-)

I thought I'd add an update on no confirmed diagnosis as yet, we're now another 2 months done the line and still no where near a diagnosis, apparently I'm a bit of a conundrum - well my Mother always said "Born bloody awkward, still bloody awkward" - and Addenbrooke's is talking about a grumbling vasculitis! My ANCA is a weak positive and - via Dr's instructions -I've reduced my pred down to 15mg a day now; thinking of reducing them to 10mg with alternate days to 15mg for 2 weeks and then maintaining at 10mg for a while.

The ENT bods - not Jonny - at Addenbrooke's have discharge me because according to them I have nothing wrong with my ear!!! Plus due to cross over appointments between my local hospital and Addenbrooke's I have been discharged by them - local hosp - as well but what infuriated me was the attitude of the consultant at my local hosp. who when I mentioned the pins and needles on the outer part of my left arm along with the ear pain basically "pooed pooed" it with "we all get those as we get older" remark; although I am prepared to give him the benefit of the doubt as his may not have heard me correctly ha! ha!

So I decided to stop taking the pain killers - which over a period of a couple of weeks I had been reducing from 30/500 Co-Codamol to 8/500 Co-Codamol anyway - last Friday 12 Apr and by Sunday the ear pain had come back magnified by 5 plus the tinnitus was very loud high frequency sound, so back to taking 8/500 although truth be said should probably gone the full hog and taken 30/500, plus along with this I had a vertigo attack which started on Sunday night and although it is still there in the morning I managed to go back to work yesterday; meaning more time off sick! Have decided to keep a log of how I am each day plus keeping a list of any symptoms I have as by the time I go back to Addenbrooke's I may have forgotten some on them and I shall take this with me.

Meanwhile work has employed someone on a full time basis and she is going to take over part of my job, I can see from employer's point of view that they need continuity on that section but it was the ominousness comment my boss made when he mentioned that we - him and me - will have to talk about my job at a later date. Does anyone know whether there is a Government scheme which when your work hours are reduced because of medical problems they - the Government - will pay the hours missing; I seem to remember reading about it somewhere but I can't find it again.

Finally I'd like to add that Dr Meyer the Medical Ophthalmologist at Addenbrooke's - at least he confirmed that the vision loss in my left eye is very likely to be permanent and didn't pussyfoot around the subject - is excellent but if you ever have to see him then take a packed lunch/tea with you; I'm not kidding :-)

Sally x

8 Replies

I have only recently started to read a bit about the possible effects of Hughes. I have a whole host of other auto-immune conditions and because there are so many its difficult to keep abreast of what may be responsible for what.

But heres something that I didnt know and prior knowledge may have changed my approach when it occured.

Back in December 2010, during the Christmas season I was fully hearing. I had NEVER had any problems AT ALL in my entire life. Not even an ear infection or wax buildup. Then overnight something happened. I woke up with a really giddy feeling and my ear was buzzing loudly.

As I had never had any ear problems I dismissed it as something that would pass. I got severe vertigo at the time. Eventually went to the GP who had no idea and said it was an ear infection. Online forum chat friends told me to go to A&E immediately. But I didnt. Eventually went but saw a junior who had no idea and was sent home. As staff returned from Christmas break I contacted my lupus consultant who saw me and tested with a tuning fork. That was the first indication of my sensorineural hearing loss, although I didnt realise the significance at the time.

These days I am totally deaf in one ear.

That I now guess is why so many Hughes patients see an ENT person. I hadnt even been aware of its necessity. I wouldnt have been without reading stuff on this forum.

The tinnitus can be a danger sign. I had never had any tinnitus before my sudden loss.


Hi there, thanks for this info I shall look up Hugh's Syndrome and see what it says. I've had tinnitus for over 20 years, a hang over from when I worked in the Ambulance Service (along with the very bad back); I have only lost a little bit of my hearing, in the high frequency area and no one seemed that concerned; this is starting to sound a bit familiar.

With regards to the vertigo this is the third attack but spread over a number of years fortunately, the first was by far the worst though and lasted for three weeks, this one had calmed down by Thursday evening enough for me to run a Brownie meeting -after work - anyway providing I didn't turn to quickly etc.

When I know a bit more about my condition - what ever it maybe - I'll let everyone know.



Dear Sima,

I do hope that 'they' sort you out or, at least, your diagnosis/condition! I think you might have to start 'banging the drum' a bit if only to make sure 'they' know you're there!

Your condition sounds a little like mine, i.e. 'uncategorised' although you mention 'Hughes', which I have never heard of- although THAT doesn't mean a thing! I'm sorry that you are having problems with your ears again not something I have encountered ;eyes yes, kidneys yes, heart ,yes ears actually not; they're fine thanks! Have you got problems with anything else? Or is it just the usual 'everything'.

Please do let me (us) know how you get on will you? My prayers, and best wishes, are with you.

Kind regards



Dear Andrew

I've contacted Addenbrooke's via e-mail a couple of times about appointments but no answer as yet but I will give them until Tuesday and will phone them and send an e-mail, if there is one "nickname" I've earned over the years and that is to be a "pain in the neck" which I have anyway ha, ha.

I've started to keep a diary logging how I feel, what symptoms etc. for each day and so far this month I've only had one day when nothing was wrong with me; whoopee! It's quite possible that the ear thing maybe something completely different but I just wish it would go away.

I'm waiting for an appointment from Papworth as Dr Meyer wants me to have a Transoesophageal Echocardigram, this is because I happened to mention that I had Scarlet Fever when I was 5yrs old and he mentioned that there could be a heart issue, although I always thought it was Rheumatic Fever that left you with a possible heart issue plus the results from one of my many blood tests has shown that I've apparently also inherited Factor V (liable to clotting) and he thinks this may have been the cause of the loss of vision and the raised ANCA; anyway we'll wait and see.

Thanks for your thought and I let you you know when I know what is going on etc.

Kind regards



Dear Sally,

I'm glad that matters appear to be a bit more 'in hand', for you; never heard of the scan you mentioned- I have had quite a few- hope it does some good though. Please do let me (us all) know, will you? Many thanks and my best wishes are with you.

Take care, as best you can, that is!



Dear Andrew,

I shall certainly keep you advised of what is going on; the scan is an internal version of an echo-cardiogram, one where I have to swallow a camera and they can take pictures of the heart.

Look after yourself.



All I can say is good luck Sally, hope all goes well.

Kind regards



Medical conditions can cause the symptoms you are experiencing, but some side effects to various meds can also cause problems.

Whilst I wouldnt advocate that you start making changes, it might be a good idea to keep a diary noting whether the tinnitus is better or worse and what you have done differently.

That could relate to eating or drinking certain things or amounts, but also fatigue levels, or general wellness.

Sorry to just mention Hughes out of the blue. I have been joining a number of communities and forgot which one I was in.

A couple of links that may be useful to you


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