I am not really a kid, but I cannot manage to become a member, so Liz told me to use the kids log in until the system is fixed.
I am 47, female, 2 teenage sons, and have never had any problems with my eyes before.
The week before 30 June (always a big time in business), I noticed my eyeball felt tender when I was putting on my eye cream on my eyelid. Didn’t think anything more if it, until that afternoon, I noticed my eye was red. I went to the chemist (thinking 30 June, can’t take time off if I have conjunctivitis) and got some drops. They did not help (although it did not get sticky) so a few days later went to the doctor. He felt it was an irritation and gave me some different drops. They did not help, so went back a few days later and he gave me some further drops and said if it was not better in 2 days he would send me to an ophthalmologist. By the next day, it had escalated to unbearable, so he me made an appointment with a specialist that day.
The ophthalmologist diagnosed iritis and gave me drops for every hour, for 2 days then drop back to 2 hourly. As soon as I dropped them back to 2 hourly, it flared up badly (the pain was unbearable! It was at night it got really bad and I kept dreaming someone was shining bright lights in my eyes, then I woke up in the middle of the night and realised I was in terrible pain), and he sent to me to a further specialist at the Lion’s Eye Institute here in Perth (Western Australia) who deals in eye inflammation. She was said it was very inflamed & that she could not see the back of my eye, and gave me an injection – the ones around the eyeball and deposit a dump of steroids into the back of the eye. This worked for a while, although I could not see very well still, and after a month or so at a follow up appointment, she said now that the iritis had cleared, she could see that my retina was very swollen. Had some scans and another injection (same type as before).
She said then that I had uveitis thoughout my eye, not just iritis.
A month or six weeks after that, the scans showed the swelling had reduced a lot, but there was still a bubble of inflammation in the retina. The Doctor felt it best to try an injection directly into the retina to try and clear it. I had this the following week in the sterile surgery there at the institute. I had to keep it covered for the day to avoid infection to the retina. That injection was horrible - TBH I can't remember the injection part, I was in such a panic I think I have blocked it. It was one that went into the front of the eye, thru to the retina. I guess the medication was steriods again - I don't know why I don't know these things!
That injection did seem to work the best of all, and my vision did clear a lot. I still have some distortion, and slight blurriness but the main problem is the difference in size of things viewed in that eye. It is like my eyes are set on different zooms. It gives me sort of double vision, although my good eye seems to override the bad one, and the “shadow” vision of the bad eye is greyer than the good eye. It is quite difficult to read my computer screen and I usually cover the bad eye with a patch.
The scans now show no inflammation as such, but there is a black line under the retina. The institute has this new scan machine, and the doc says with the old machine they would not have even seen this line. At first she thought it was probably scarring but because I am still so symptomatic, she feels it is some residual inflammation.
I was tested for glasses last week, but they didn’t really help at all. Because it is my retina, glasses cannot fix it. (I did wonder why I went to the bother of being tested then, but we do as we are told!)
The doc does not really want to do another injection to the retina as she feels the risks outweigh the benefits that I may get at this stage. So, she is trying a fluid type tablet and anti inflammatory drop. She said sometimes this works to clear up the tail end bits, but not always. She felt a softly approach was best to try first. In 3 weeks we will review it and see if it is working.
I also have a couple of large floaters and a big "jelly" sort of glob that moves thru my vision. It is a clump of inflammation apparently. It has become more transparent than it was but it is still distracting. I have to learn to live with these as they most likely will not go away and are not bad enough for surgery.
I have been tested as HLA B27+ but have no other AI issues, although my back was very bad for about 6 weeks and the eye doc sent me to a rheumatologist who said I was too old to be diagnosed with AS (gasp! How rude!) , as I had no damage on my x rays. I still feel it was my SI joint that was playing up, but it may have been mechanical as he felt it was.
The only other health issues I have are heartburn for which a take medication for every day (for the last 9 years), and chronic low iron. (Boys look away, girl talk coming up) My GP felt it was to do with my periods, but I told her I had a hysterectomy some years ago (different GP, altho it was on my records), due to my iron, so she is sending me to haematologist to see why my iron is always so low. Any ideas?
OK, I think I have blathered on enough for now! If you have read this far, thankyou!
Oh, I do have copies of scans if we are allowed to post pics here? And if anyone is interested to see them of course...
Aly in Oz
(Gawd I did a preview and it's a bit of a book isn't it?)
Welcome aboard! It' s good to find you here! I see you managed to solve all problems with registration. Believe me, you won' t regret this!. People are wonderful here!. It' s a great family.
Re: New member in Australia
Aly,
Welcome to the group!
boy did you get a major bout of inflammation going for HLA B27 uveitis to go to pan uveitis in such a short period of time is very unusual. I'll get some articles together for you regarding HLA B27 uveitis and other autoimmune diseases which can present in women after one is in their mid thirties.
with inflammation in the back of the eye, often chemotherapeutic medications are added to quiet the beast before permanent damage is done. drugs such as Methotrexate, Cellcept, cyclosporine etc are used and have been found to be quite safe in treament of uveitis. (please see latest post on this topic in articles in the Learning about OID forum and articles from our parent site, www.uveitis.org
We have another young lady who lives in Australia who is named Ally too.
Re: New member in Australia
CLINICAL FEATURES OF HLA-B27 ANTERIOR UVEITIS
DENIS WAKEFIELD FRACP, FRCPA 1 , 4 , JOAN EASTER BSC, MT (ASCP) 2 RONALD PENNY DSC, FRACP, FRCPA 3
1 School of Pathology, The University of New South Wales; Uveitis Research Clinic, Sydney Eye Hospital 2 Department of Immunology, St Vincent's Hospital, Sydney; Department of Medicine, The University of New South Wales; Uveitis Research Clinic, Sydney Eye Hospital 3 Department of Immunology, St Vincent's Hospital, Sydney; Department of Medicine, The University of New South Wales; Uveitis Research Clinic, Sydney Eye Hospital
Correspondence to 4 School of Pathology, University of New South Wales, PO Box 1, Kensington, New South Wales 2033.
Copyright 1984 Royal Australian and New Zealand College of Ophthalmologists
KEYWORDS
uveitis • HLA-B27 • clinical features.
ABSTRACT
The association of anterior Uveitis (AU) with the HLA-B27 histocompatibility antigen is now well established; however, the clinical features of this subgroup of AU patients have not been extensively studied. We investigated 81 consecutive patients with AU over a 12-month period.
Fifty-one percent of the patients were HLA-B27-positive as were all patients with ankylosing spondylitis and Reiter's syndrome. This group of AU patients, when compared to HLA-B-27-negative patients, had more frequent attacks of shorter duration and rarely developed chronic AU.
Males with AU, when compared with females, had a higher incidence of HLA-B27 (31/41; p<0.005) and were more likely to have an associated rheumatic disease such as anky losing spondylitis, Reiter's syndrome or another seronegative arthritis. In contrast, HLA-B27-positive AU patients without associated rheumatic disease occurred with equal frequency in males and females. Females in this group had a comparatively later age of onset of AU (47 vs 40 years); had more attacks, each being of longer duration; and had a higher attack rate per year. This study defines the nature, severity and prognosis of AU with respect to the sex, associated rheumatic disease and HLA-B27 status of patients.
DIGITAL OBJECT IDENTIFIER (DOI)
10.1111/j.1442-9071.1984.tb01155.x About DOI
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Re: New member in Australia
Age at disease onset and diagnosis delay in HLA-B27 negative vs. positive patients with ankylosing spondylitis.Feldtkeller E, Khan MA, van der Heijde D, van der Linden S, Braun J.
Ankylosing Spondylitis International Federation, Michaeliburgstrasse 15, 81671 Munich, Germany. E.Feldtkeller@t-online.de
OBJECTIVE: To investigate differences between HLA-B27(-) and HLA-B27(+) patients with ankylosing spondylitis (AS). METHODS: A total of 1080 patients with AS responded to a questionnaire containing 30 questions; 945 (87.5%) knew their HLA-B27 status, 10% of them being B27(-). RESULTS: The average age at disease onset was 27.7 years in B27(-) and 24.8 years in B27(+) AS (P < 0.01). The average age at diagnosis was 39.1 and 33.2 years and the average diagnosis delay 11.4 and 8.5 years, respectively. The distribution in age at disease onset was significantly wider in B27(-) (standard deviation 10.0 years) than in B27(+) AS (8.3 years). The percentages with childhood (age < 16 years) disease onset did not differ significantly (7.6% vs. 6.2%, respectively), whereas the percentage of late onset (age > 40 years) was significantly greater among B27(-) (13%) than among B27(+) (5%) patients with AS. There is a difference in average age at disease onset between male (25.7 years) and female (24.2 years) AS patients, and no difference between patients with primary AS and AS associated with psoriasis, inflammatory bowel disease, or reactive arthritis. Acute anterior uveitis was significantly less frequent in B27(-) (26%) than in B27(+) (41%) patients with AS. CONCLUSIONS. This study of a much larger number of B27(-) AS patients than have been studied previously confirms earlier reports indicating a significantly older average age at disease onset and a less frequent prevalence of acute anterior uveitis in B27(-) than in B27(+) AS. The frequency of late disease onset (after 40 years of age) is significantly higher in B27(-) AS. We provide the first report on significant differences in the distribution curves for the age at disease onset and for the age at diagnosis between B27(-)and B27(+) patients with AS. The average delay between the first spondyloarthritic symptoms and the diagnosis is significantly longer in B27(-) than in B27(+) AS. The frequency of juvenile disease onset (before age 16 years) is nearly the same, irrespective of the B27 status.
PMID: 12634937 [PubMed - indexed for MEDLINE]
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Ophthalmic findings and frequency of extraocular manifestations in patients with HLA-B27 uveitis: a study of 175 cases. Ophthalmology. 2004 Apr; 111(4):802-9.
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The LMP2 polymorphism is associated with susceptibility to acute anterior uveitis in HLA-B27 positive juvenile and adult Mexican subjects with ankylosing spondylitis. Ann Rheum Dis. 1997 Aug; 56( :488-92.
[Ann Rheum Dis. 1997]
Prevalence of spondyloarthritis in 504 Chinese patients with HLA-B27-associated acute anterior uveitis. Scand J Rheumatol. 2009 Mar-Apr; 38(2):84-90.
[Scand J Rheumatol. 2009]
ReviewClinical features and associated systemic diseases of HLA-B27 uveitis. Am J Ophthalmol. 1996 Jan; 121(1):47-56.
[Am J Ophthalmol. 1996]
ReviewAnterior uveitis, inflammatory bowel disease, and ankylosing spondylitis in a HLA-B27-positive woman. South Med J. 2006 May; 99(5):531-3.
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Re: New member in Australia
AUSTRALIA
Peter McCluskey, M.D.
St. Vincent’s Clinic Tel: 9332-6062
Suite 1004 438 Victoria Street FAX: 9332-6063
Darlinghurst, NSW 2010
E-mail: iritis@ozemail.com.au
Richard Stawell, MD
Cabrini Medical Centre
Isabella Street, Suite 52
Malvern, Australia 3144
Tel: +61 3 9509 4233 Fax: +61 3 9500 9376
Denis Wakefield M.D.
The University of South Wales Tel: 612 938 52351
Professional Suite FAX: 612 93851389
Polyclinic Building
Prince of Wales Hospital
High Street
Randwick 2031
AUSTRALIAE-mail: d.wakefield@unsw.edu.au
Ehud Zamir M.D.
Director of Clinical Training
The Royal Victorian Eye and Ear Hospital
32 Gisborne Street
East Melbourne
Victoria 3002
Locked Bag 8
East Melbourne
Tel 61-3-9929-8533
Swithboard 61-3-9929-8666
Fax 61-3-9663-7203
Email
Re: New member in Australia
Hi Federica! Thanks for your help! I wonder how I would have ever got here had you not posted that you are on facebook! I would probably have given up.
We have another young lady who lives in Australia who is named Ally too.
It's an Aussie thing - we are called Ally/Aly here.
Mike thanks for your info! I am a bit beary in the mornings so took me a while to read, but I didn't like the sound of this: In contrast, HLA-B27-positive AU patients without associated rheumatic disease occurred with equal frequency in males and females. Females in this group had a comparatively later age of onset of AU (47 vs 40 years); had more attacks, each being of longer duration; and had a higher attack rate per year.
Oh dear, doesnt bode well, does it?
The last list, is that a list of specialists in Australia? If so, you should probably add my doctor to the list, in case you get others in Perth. She is:
Dr Mei-Ling Tay-Kearney (Opportunistic infections, uveitis and inflammatory disorders of the eye)
Dr Tay-Kearney completed her medical training in Perth, Western Australia before pursuing postgraduate study at Johns Hopkins Hospital in Baltimore, USA. In 2003 Dr Tay-Kearney was appointed Head of Department of Ophthalmology at Royal Perth Hospital. She is a Senior Lecturer at UWA and a member of the Australian Society for HIV Medicine and the Australian Uveitis Study Group. She is also an Examiner for the RANZCO Part 2 College examinations, coordinator of the Mentoring Programme for trainees in WA, and a WA representative for Continuing Professional Development. Dr Tay-Kearney delivers training to rural and regional based GPs and workplace safety education to companies in north-west Western Australia.
Re: New member in Australia
The doctors on the 'list' provide credentials to Dr Foster at our parent site for inclusion on his 'list' of Ocular immunologists. if your doctor has done post graduate, fellowship training in Ocular Inflammatory disease processes, then she can send him information for inclusion on his list of specialsts. I don't see specific fellowship level training in OID at a given University with such a fellowship program in OID. It doesn't mean she hasn't done such a fellowship, just not apparent from your post.
all I see is 'post graduate training at....' without specific reference to the uveitis fellowship.
Re: New member in Australia
Oh I am sure she is not bothered about being on Dr Fosters list or not. But the LEI is pretty well known and if you need help in Perth, she is the one to see. Perth is a long way from the city's on your list - I don't think you would travel that far to see a doctor, esp when one is on your doorstep.
Just googled it, and found this: Past Fellows
Fellows graduating from the Division of Ocular Immunology's Fellowship program have been extremely successful in securing academic positions or other employment they desire. Three fellows have been awarded NIH-funded K-23 training grants, 2 have been awarded R-01 grants, and 6 have been on faculty at The Wilmer Eye Institute. A list of former fellows since 1990 is provided below including their current positions.
Fellow: Thomas E. Flynn, M.D.
Years: 1990-1992
Current Position: Assistant Clinical Professor, Department of Ophthalmology
Columbia University School of Medicine
Fellow: Nezih M. Coskuncan, M.D.
Years: 1992-1994
Current Position: Private Practice, Florida
Fellow: Mei-Ling Tay-Kearney, M.D.
Years: 1993-1995
Current Position: Senior Lecturer
University of Western Australia (Plus more)
from www.hopkinsmedicine.org/w...eitis.html
I think you will find she is quite world reknowned.
:488-92. ![0]](http://uveitis.org/kids/images/beer.gif)
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