Sticky Blood-Hughes Syndrome Support
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Branch Retinal Vein Occlusion

Wondering if anyone else has had this? In November last year I went in for a eye exam to check on status of a condition known as Fuchs, a genetic condition that affects the cornea.

They discovered the condition I mentioned in the subject line. Fortunately, it did not affect my vision. The eye doc indicated that this is a clot that generally is related to heart disease. I have never been dx with that, have low blood pressure and very low cholesterol due to a low fat vegetarian diet and regular exercise.

My wife started researching this and that led us to Hughes. Family doc did the blood test and I had a barely positive test. Three months later again had a barely positive test.

About a year ago had a superficial vein thrombosis in left lower calf. Then about a week ago after driving three days several hours a day felt a soreness in same leg. Went to a vein doc who found three clots in that leg. Have just been prescribed Xarelto, had been taking one full strength aspirin a day.

So, has anyone else had a retinal occlusion?

Should add I am male, age 63, dx at this point Primary APS.


6 Replies

Hi Jim - Im assuming you are in the USA? First of all Im sorry that you have been diagnosed with Primary APS and secondly I dont have the condition that you mention in your title.

Xarelto -Rivaroxaban, is one of the new oral anticoagulants which as yet is still under trial for the treatment of Hughes Syndrome (APS) due to the fact that there is no reversal agent. It is estimated that it will be at least a few years before it will be used for this condition.

We do have a few people that have been given it in the USA but Im not sure why the Doctors there are using it for patients - perhaps they know something we don't!! With a number of DVT's the normal treatment would have been to have injected Heparin for five days and then bridged over to warfarin.

I wish you well and hope things go well for you. Please do let us know how you are doing. x


Hi there, a big welcome to you, and yes to the advise already offered above, and, I am pleased that you have had the diagnosis as it is so very difficult for people when they do not have a medical diagnosis, please keep in touch and I hope you find this forum useful to support your condition. Mary F x


Thanks to you both. In the U.S. the FDA approved Rivaroxaban for treatment of DVT and PE back last November. I realize that this is not a treatment for APS but I believe that the doc is trying to prevent a DVT and/or PE.

It does concern me that there is no reversal although my understanding is that it is out of your system in 24-36 hours. So, with any luck, I won't have a major bleeding experience. Starting the med today.

The family doc is aware that I am trying to get seen at the hematology department of the Mayo Clinic in Scottsdale, AZ and am awaiting a response from them.

Obviously, we would all like to avoid clots of any kind. Had the clot on my retina been in the visual field I would likely have had permanent damage to my vision in that eye.

Despite having no luck with the lottery I seem fairly good at coming up with diseases that are more rare in men. Fuchs corneal dystrophy is also primarily a disease found in women. I keep telling my wife that I must have more estrogen than I should :)


I think it it is really bad luck for all of us TBH. As Mary says at least you have a dx and seem to be getting good advice. If you are going to the Mayo I would also think that the expertise there would be good. As long as that is all the oestrogen is causing you should be ok! ;)

I on the other hand am unlucky enough to be seronegative for APS despite a stroke, PE and miscarriages. I had to go to the man himself to get my dx. I also do not get results for any of the other conditions I have been dx with other than Hashimotos and most tests seem to come back normal despite symptoms pointing strongly at something so we all seem to have our cross to bear!! I was born on Friday 13th so perhaps that has something to do with it :o


Reading the postings on this site makes me realize that so far I have been relatively lucky. We retired almost 5 years ago, sold our home and stuff and hit the road in an RV and have been visiting the parks, forests and deserts ever since. Currently parked on the side of a mountain in southern New Mexico.

Only wish I had done it sooner but I did manage to get out of the race at 59.

The addition of this condition makes me want to get it all done before something permanently disabling happens but I realize that the best thing to do is to take it day by day.



I envy you....thats something I always wanted to do! Things happen for a reason I believe and your life style is telling you to carry on doing exactly what you are doing. xx


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