I have just been diagnosed with optical vasculitis; after a year of having a thousand and one tests/scans, well that was what it felt like anyway :-). In December last year the sight in my good - right - eye started to "play up"; having lost 60% of the vision in my left eye in Jan 2013 and this has now left me partially sighted.
What l would like to know is, is there anyone else on here who has a vasculitis which involves the eyes and has balance issues and if so what have your doctors told you about it; l have yet to mention this to my consultant.
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Sima1952
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What sort of balance problems Sima? A friend of mine with a not-yet-identified vasculitis had awful balance problems which pretty much made her housebound - the rheumy said it was from the pred she was wobbly but the neurologist said straight away it was something to do with her ears (posh name benign paroxysmal postural vertigo) and it is something that can be sorted out very simply using something called the "Epley manoeuvre" where the head is held in different positions for a short time. GPs or even nurses can do it but apparently don't like doing it in the practice because it can make people feel seasick when it is done! It is very easy and has no other side effects - it might be worth trying.
This is the link to the page on the Patient.co.uk site about it
This is a very useful site for finding information about medical things - started by medics in the northeast of England it provides reliable info for doctors and patient as well as having a load of forums.
Several types of vasculitis affect the eyes - most noticeably Giant Cell Arteritis (GCA) but this usually only affects people over 60.
Wegeners granulomatosis - or GPA - often affects the ears and can also affect that part of the inner ear - the vestibular canals - that control one's sense of balance. This can also be affected by other factors, such as an infection & is generally referred to as "labyrinthitis" or Meniere's disease. It is caused by a build up of fluid in the maze of fine passages that are involved in balance & hearing. This can cause deafness & "tinnitus" - ringing in the ears. It is not to do with prednisolone as those worst affected have never had any treatment prior to the problem starting, in fact it is one of those many diagnostic indicators that are often missed.
John - the BSR guidelines now say over 50 for GCA and I know several ladies in their early to mid 50s. I grant it is unusual - but it doesn't mean it doesn't happen. The youngest person with biopsy proven GCA was 17 and a man of 37 in South Wales who died of a stroke last year was found at PM to have had undiagnosed GCA. Pathologists know it all - but it's too late!
It's difficult to know which bit of info needs trumpeting more: younger people can develop it or that the biopsy isn't an accurate indicator! If it is positive it is 100% right. If it is negative - it doesn't rule out GCA.
MOST people with GCA are over 60, but there are always exceptions. The accepted definition is as follows:- "GCA occurs in individuals older than 50 and the incidence increases with age. The age-specific incidence rates per 100,000 population increases from 2 in the 50-59 age group to 52 in the 80+ age group". This does not preclude those younger than 50, but they would certainly be exceptions. We hope that when the UK Vasculitis Registry database is fully operational, it will provide much sounder evidence. I never thought if it does or should include post-mortem data. I will enquire.
I will agree with you and say it LOUD - biopsy reports, biomarkers & other investigations are rarely definitive. They are indicators and should be understood alongside other indicators - most especially the patient's symptoms. Sadly, too many doctors believe the printed lab report and let it over-ride the evidence that is sitting in the chair on the other side of the desk in the consulting room.
Thanks John - I only commented because this is a fight the PMR/GCA people have again and again. An anecdotal survey of doctors in the northeast has shown most GPs don't even know there are guidelines - never mind what is in them. Rheumys knew they existed - our experiences suggests they may not have read them! I don't know how much PM data there is re GCA - but this case made the local paper. The man had been to the doctor repeatedly with fairly typical GCA symptoms and finally had a stroke. He'd been considered too young for GCA.
Our other bugbear is the refusal to consider clinical symptoms appearing with normal acute phase reactants. One in six never show raised levels.
Combine the two and you have a lady who posted recently on the PMR forum here: in her mid 40s and with textbook PMR symptoms she was finally sent to one of the main research consultants in the UK. He too denied PMR - on those grounds. He did however send her for imaging that displayed typical inflammation. So - it was PMR. He was slightly abashed.
Time for you to crusade John: "Sadly, too many doctors believe the printed lab report and let it over-ride the evidence that is sitting in the chair on the other side of the desk in the consulting room." I may request that to be on my gravestone...
I have vasculitis in both eyes as well as anterior and posterior uveitis, plus in my left eye I have a retinal vein occlusion and the blood supply has died to a small area of my retina in my right I have had a peripheral bleed and a roth spot. I am in the process of having tests for vasculitis in my kidneys.
I don.t have any balance issues but it is something you need to tell your consultant about.
Hv=ave l look on the vasculitis uk website as it has loads of info
I have several overlapping types of vasculitis, the first symptom of which- overlooked/not recognised at the time- was inflammation in the eyes. It is also a symptom that I have to watch for now- could indicate a 'flare up'. The damage, to my eyes, was/is not apparently long term- lucky old me! (Just the brain damage, heart issues, and kidney problems (I had a transplant last July) to contend with then!) I have had to have cataracts done- result of all the medication- some seven years ago mind.
Hope this has been of some help, to you, please feel free to contact me, us all, again if we can help further.
Thank you everyone for your advice. It's just getting used to not being able to see properly, losing my independence as far as driving is concerned plus feeling a little down, which when you consider that l've been suffering from clinical depression for over 20yrs and l''m on anti-depressants, then you can probably see where l coming from.
The balance thing is obviously to do with my ears, l say this as l've had tinnitus for a very long time, was diagnosed pre-Menieres when in my 40's - considered to young to have proper Menieres! - so l'm not surprised really that once you pointed this out it all started to make sense; having said that l almost fell down the stairs a couple of hours ago because l missed the top step, l must write myself a little note "Don't rush, take your time"
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