Central Retinal Vein Occlusion - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Central Retinal Vein Occlusion

Zamalek profile image

Is there anyone on the Forum who has CRVO or BRVO (branch retinal vein occlusion). I was diagnosed by

Prof.Khamashta 7 years ago, after my first BRVO. I have unfortunately had a second, much worse. The

treatment to possibly restore some sight to the affected eye, is with injections. These injections carry a

risk of arterial thromboembolic events, and this is without the obvious complication of APS clotting, and

the blood thinner. I would love to hear from anyone who has the condition and has either had the treatment or has weighed up the benefits versus risks, and not gone ahead with said injections.

Thank you

12 Replies

Its strange you saying that. Does this sound like yours'. Yesterday I went to urgent eye centre because my right eye vision is distorted. I'm not sure what they think it is, but they want to do and angiogram? Using dye in blood on my eyes to see what's going on. They found what I think they said was a blood clot that may or may not dissolve on it'd own, but if indicated there is treatment.. My investigation is not until 15th June 2015. But having said that, any penetrative procedure in the eye is usually the last resort due to possible complications. If there was no other option I would try any procedure because, the distortion in my vision us annoying and intrusive plus I enjoy driving.

Hi Mildredmuckyface,

I suppose you have APS (Hughes Syndrome). I have APS and all the antibodies in high titres since 13 years.

I have had a lot of problems with my Eyes like AURAs, doublevision, lost my vision in my right eye (the lower half part of the right eye for some minutes. Saw my heartpulse in the eyes.

When I started warfarin all my neurolgical problems disappeared. I had also very high bloodpressure (even with bloodpressure drugs) before warfarin and my bloodpressure is now normal (I still have the bloodpressure and heart drugs) after warfarin. I keep my INR in range and is around 3.5 in INR.

I also selftest since 4 years.

The eye specialists could not see anything wrong with my Eyes.

I wonder if you are on bloodthinner and if you have high bloodpressure?

Best wishes from Kerstin in Stockholm

Thank you for your reply. It sounds like a similar problem. Do you have Anti-phospholipid Syndrome? it is one of the causes of Retinal Vein Occlusion.My gut feeling is not to have the injections, because of the risk of a stroke.I have had all the investigations done, including the dye into the veins. The clot has

caused Macular Oedema, which adds to the loss of vision, and distorts the

vision. I keep an INR 3-4, and still this happens. My best wishes to you for

June 15th, and I would be very interested to hear how you get on.

TreyBon64 profile image
TreyBon64 in reply to Zamalek

Yes, I have APS. I was diagnosed in late 2006 and it came as quite a shock. I've had up and down days, haven't we all, but losing my sight is upsetting. Like you i would have to think long and hard about the treatment but I would discuss it with my Opthalmologist and the medical team at the inr clinic. I would like to do all i could to keep my sight, but it seems that I am on another vision 'spike' as I've had piercing pain in my right eye again (no floaters as yet) but the migraines are back, so I'll be at the opticians again next week. My inr us kept between 2.5 and 3.5 i prefer it to be over 3.0 so it'll be interesting to see what it is when I next go.

MaryF profile image

I wish you the best of luck with whatever you decide I am glad you have the right medical team in the picture, please keep us posted, fingers crossed for you. MaryF

Zamalek profile image
Zamalek in reply to MaryF

Thank you for your reply and good wishes.

Hi Zamalek i had eye trouble starting last year. The diagnosis was macular degeneration. When I went early this year the consultant stated I'd had a small bleed in the eye that had stopped and would not require an injection this time but if it happened again then surgery or an injection may be an option, depending which problem kicks off first. I go next week for my next eye exam. My vision is very poor in the right eye and I have trouble seeing at a distance of reading. Having the treatment is something I would have to think long and hard about. I wish you luck in your decision and for an excellent outcome. Trey xx

Thank you for your reply.

My diagnosis is sub macular hemorrage, possibly as the result of my high myopia. I will have further investigation on jun 15th. I do have APS plus other stuff I can't remember just now, u am so fed up. Every time I get back on my feet, boom something else. Oh well onwards and upwards. Xx

I had a central retinal vein occlusion in 2005. I was diagnosed with APS 6 months later. I only have a little peripheral sight since then in my left eye. Luckily the other eye is fine. I've been on warfarin since then. I was never told about fixing the sight with injections but I got used to it within a few months.

If I had the choice today with 10 years experience of living with the CRVO, of possible slight sight restoration in that eye but a risk of other complications I'd live with the loss of sight as it's only one eye affected. it was my dominant eye that had the issue so it is frustrating some times but I just think I was lucky to get the clot affecting my eye and not somewhere more serious. Some days I don't even think about it. I was upset initially as it took a while before I could juggle again. It was much harder for my wife I think as I was told there was a high risk of a second episode within the next 6 months or so

Thank you for your reply which I have found very helpful. Can you tell me if your sight in the affected eye has deteriorated over the last 10 years. I have been told that I will

loose the sight completely, and that the longer I wait before I have the injections, the

less likelhood of a good outcome. This is my second RVO, and like you I was told that

usually there is another within five years. I have gone 7 years between the two, though

this one is much more severe. I feel that I could live with the existing loss of sight, but

if my second eye were to go I would probably risk the treatment. Also, the treatment

was not available 7 years ago. Also the Hospital I attend is very casual about the APS

and are not the lease bit bothered about my keeping an INR of between 3-4, and this I

find worrying. There is much more concern at the Dentist I find. Thank you again for

your reply and Best Wishes.

Hello I went to the opticians on Tuesday to have a routine eye test and she stopped really before she had got going and said i had better stop there i need to refer you to the hospital i can see blockages behind your eye.

She said i wouldn't get appointment for at least 3 weeks But had it that eve as a matter of emergency.

Next day i was at the eye clinic being seen by the eye bloke and after various test and using all machines on the department he enlightened me that I have a Central Retina Vein Occlusion. He also commented on my BP it was way to high {for that i was admitted to an overnight stay in the hospital}

I have pain in my left side of face and in the top and feel like there is pressure behind the eye.

He wanted me to have blood tests too one of them being to check the inflammation levels in the blood which came back high. and was told by the consultant and a doctor that it sounded like Temporal Artiritus would this be connected in anyway

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