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Jemima Harrison
Posts: 5
Joined: Wed Apr 11, 2012 6:08 am

Good to have found you!

Post by Jemima Harrison »

I stumbled on this site after looking for info on links between uveitis and wheat/gluten intolerance as this is something I'm exploring.

I am now 53 years old and I was diagnosed with intermediate uveitis three years ago, with snowbanks in both eyes initially, but it is only my right eye that has spiralled out of control. I was initially treated with steroid drops, which cleared my left eye but not my right. When steroid drops failed, I had an orbital floor steroid injection, then finally intra-ocular triamcinalone in spring 2010 which worked really well for more than six months. When the uveitis returned I was offered an Ozurdex steroid implant in the hope of it working for longer than the triamcinalone. Unfortunately, it caused a vitreous haemorrhage - assumed because it hit some peripheral neovascularisation. When this failed to clear, I had a vitrectomy which revealed some white patches on my retina, diagnosed as necrotising retinitis, thought to be viral initially and treated with Valycyclovir; then later thought to be toxoplasmosis and treated with antibiotics (Septrin). Was also by this stage on high dose Prednisolone (80mg) which was wonderful initially (not sure it did much to calm the eye, but I felt great!) but eventually caused the usual side effects, which I found intolerable.

Unfortunately, the eye continued to bleed and I later had another wash-out at which my lens was removed due to cataract (likely caused by the treatment) but it was impossible to put in a new lens because the lens capsule was very fragile. The eye has continued to bleed as a result of rampant rubeosis - controlled very short-term (about a month) by Avastin/Lucentis injections.

Extensive blood and other tests have thrown up nothing very significant other than positive lupus anticoagulant tests with high titres of anticardiolipin antibodies. The immunologists think, then, that anti-phospholipid syndrome could be the root cause. Unfortunately, I cannot be given the standard treatment of aspirin/warfarin/heparin because of the risk of bleeding in the eye. Catch 22...

My most recent treatment has been a Yag capsulotomy a month ago to zap my empty lens capsule, which had moved and was blocking the view to the retina. Then, three weeks ago, with the eye quiet-ish following a Lucentis injection on Feb 27, I was due to have more laser on the retina in the hope of stopping the ischemic drive. I pulled out of this at the last moment for two main reasons:

1. my eye now reacts very badly any time anything is done to it, with wildly fluctuaating pressures (from 3 to 78, and with the high pressure only just controlled by Diamox, Cosopt, Xalatan + Iopidine).

2. my stress levels, which have been extremely high (I am a film-maker) have dropped considerably because I have just finished a long and difficult project. I felt there was a fighting chance that with less stress, and looking after myself rather better (have definitely not been doing this...am now considerably overweight at 106kg) I might be able to stop the cycle.

I also suffer from plans planitis and a touch of arthritis and have also had the odd flare up of other likely immune-mediated issues such as hives and dermatitis (both of which I suffered from - consecutively - for several months before they suddenly resolved).

I make science documentaries for a living, so am not into alternative therapies, but with conventional medicine failing me, I thought I would explore diet and stumbled on the low-carb Primal Blueprint diet, which cuts out all wheat (and refined sugar). It is incredibly early days (only three weeks) but I am astonished by how well I feel and - touch wood - the eye is still quiet, and although the pressures are still fluctuating (the drainage angles are now zipped up) I can keep the pressures to reasonable levels without medication (the pressure is mostly low and when it's high I can bring it down with exercise). In fact, I have stopped all medication, even the steroid (Maxidex) drops that I have been on for the past three years.

I see in the literature that there is a link between gluten-intolerance and uveitis, and there are some anecdotal reports here from those who have cut out gluten and done well, so I thought I would join to a) try and prompt more interest in this possible link and b) to hopefully get a bit of support, especially from anyone who has had the misfortune to have had a similar complex eye history.

So thank you very much for providing this virtual space!

Jemima Harrison
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Good to have found you!

Post by Mike Bartolatz »

Jemima, welcome to the group!!
my personal history has longstanding intermediate uveitis as the root cause of my vision loss, treated only with steroids. because of this I started research back in the mid 90's when I got my first computer and went online with the urging of my son who taught me how to do searches and to cut and paste. that's when I got invovled with this site and http://www.parsplanitis.org where I am the administrator and moderator For the Ocular Immunology and Uveitis foundation in Cambridge, MA USA.
you mentioned lupus anticoagulant and amyloidosis. I assume you have been tested for Lupus and Sjorgren's syndrome so I ask what were your test results for anti RO 52 (SSA) and anit LA (SSB) linked to both lupus and sjogrens syndrome? I as this because lupus is renown for having retinal vasculitis and neovascularization of the retina. if RO52 is present it is linked to transeverse myelitis as well as sjogren's syndrome.
frequently optic neuritis is also present in SLE and Sjogren's syndrome ant when transversemyelitis is present the anti NMO IgG antibody can be tested for. I assume you are in the UK? so I STRONGLY urge you to go to London for a consultation with Professor William Ayliffe.
with amyloidosis complicating things it can cause temporal arteritis as well as problems with the heart and brain and Kidneys. you need to have the Smith Antibody tested for which is linked to kidney involvement in SLE. I would also have testing done for other clotting factors.
this can mimic Multple Sclerosis so a MRI with contrast needs to be done on your optic nerves and brain and spine to look for changes there.
the NMO was formerly known as Devic's disease and in Japanese it was known as optical spinal MS.
Professor Ayliffes contact information can be found at http://www.uveitis.org in the PATIENT information section of the site. he is the BEST specialist in the UK additionally I have put a lot of information together at http://www.parsplanitis.org linking genes and other symptoms to various disease processes associated with Uveitis. iN the UK there is a website called Olivia'svison that you can google and join in the ongoing disecussion. there are several individuals volunteering that can help you maneuver through the NHS and get to professor Ayliffe. they are members of http://www.uosg.org as well.

you need to get on a corticosteroid sparing approach to treatment before this blinds you. I do my online work to provent this from happening. I am legally blind in my left eye with considerable peripheral vison loss and epiretinal membranes causing problems in my right. I was only treated with steroids and injections. I am a steroid responder and that caused the pressure to go up and causing the peripheral vision loss.
I know that had I been offered MODERN treatment for my intermediate uveitis, it wouldn't have progressed as far as it has. you need to find out if Lupus has caused CNS problems as that would indicate what drugs to use to treat it before it causes major problems. you may also have to go on Blood thinners to prevent strokes too which I have had. I have lesions on my brain but they are 'not specific'.

I hope this helps,
Mike Bartolatz
Mike Bartolatz
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