I was diagnosed about 8 years ago with APS and like others with the condition struggle with many symptoms.
Four months ago I went to my optician with strange vision blur in one eye. I went to see the consultant ophthalmologist and was told it's a form of macular degeneration. NOW I have the same in my left eye There is nothing they can do I've seen the problem on the pictures taken of my eyes but I'll have to wait and see what the new pictures show in 2 weeks time. The other thing that gets on my nerves are the floaters ... It looks like I have snakes in my eyes.
Does anyone else have this problem?
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TreyBon64
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Sorry you are having such a tough time, I hope your appointments go well, and I note the advice from APsnotFAB above, which is a good route to explore, please keep us posted. MaryF x
This year alone I have had both eyes operated on for cataracts (floaters is a symptom) and a great deal more trouble with my left eye which is ongoing. It just blurs as though a muslin cloth has draped over it and everything I see I see like a Monet painting.
Is it a direct result of APS? It seems I can't get a straight answer out of any ophthalmologist. I'd like to tell you it will all be all right, but I can't say that. It's the corner of Wait and See for me again.
Good luck on your journey. Incidentally, the only reason they found the eye problem was a standard 3 mo Plaquenil check up.
Hi CanaryD - no, cataracts are not related to APS. I have one on each eye and am only 44 - the optician was a bit shocked and looked into it and found they were caused by steroid treatment for APS with prednisolone. A bit of a pain to say the least - I can't drive any more and can hardly bear to look at anything at night if it has lights on it! It's also very difficult to see anything in twilight.
Macular degeneration can be caused by hydroxycholoroquine (although less so nowadays as the tablets are not like they used to be) which is why it is very important to have regular check ups.
Not sure what could be going on with your left eye though - is it another cataract?
Hi canary ... my problem I went to the optician because of the vision difficulties and I was shocked when she shone the optical light in my eye and I could see the black retinal damage. It was like an ink spot. I too am on placquinel but half the dose I was previously on because I am now on methotrexate infections once a week. Tomorrow I see my Rheumatologist but my ophthalmologist appt has now been postponed until Friday the 13th ! Xx
canary..that is what i had ..they said i had optic nerve nuitis..it cleared up but took so very long..and they said it was do to a ittsy bittsy clot on the nerve...hope you feel better by now
Hi Lure ... I was on warfarin after the birth of my daughter 9 yrs ago but my inr wouldn't stabilise on it and my hair started falling out so it was changed to aconenumarol (a blood thinner) and my inr stabilised. It's funny though that the blood shot eyes and vision problems started when I was put on methotrexate and the placquinel dose reduced. Or is that just coincidence I wonder.
You see I "talk" so much of warfarin because for me it was a "wonder-drug". I had and have still some problems with eyes but it can be Sjögrens or Blefarit. All the neurological eyeproblems disappeared after warfarin. They must have been microclots.
Because this illnes is so new and rare and so few doctors know APS I am sure that not the last word is said about "microclots" for ex and what they can cause. Eye-trouble is an important APS-symtom.
I can tell you I have to selftest because it is difficult to fix a stable INR.
So sorry for you. My mother got this in her early 80s and my sister who is in her late 50s is showing signs of it. I believe the wet kind that my mother has is treatable to slow things down but not sure about the dry one. And I sympathise with you about the floaters as I have developed some and am trying to get used to them.
Sorry to hear this TreyB - I know there have been some new techniques used in the treatment of MD recently as it's a growing problem, so I hope they can stop you going blind altogether.
I have a Central Retinal Vein Occlusion in my right eye. I, like you, had blurred vision and went to the Drs. CRVO is the reason I found out I had Hughes. It is a blood colt, that if not treated I will go blind, I have been battling this clot for 2 yrs and have paid close to $10,000 for the injections of Avastin that I get in my eye every month along with test done every 3 months. So far it appears to be a bandaid but have been told by my Optomologist that eventually I will heal.
I have a feeling that we are not suffering from the same thing but wanted to let you know you are not alone in fighting to save your eye sight. I get floaters all the time....mostly when I am outside during the day or by bright lights.
I haven't got the letter to hand, ibshetan, but what you've explained sounds about right. The floaters drive me nuts and I just hope my ophthalmologist can do something to delay the inevitable. I also get piercing pains in my eyes sometimes. Like someone has stuck a needle in my eye(s).
I have no pain in my eye at all. The only pain I have is after the freezing comes out after the injection into it....the pain will last for 24 hrs and then I am good to go. I am not on warfarin, only a low-dose aspirin a day.
An update. I've still got the floaters but no increase in them. The hospital have changed my review appointment 3 times now, so my new appointment is now 23rd April!
i have so many floaters that i have to keep moving my eyes so i can see..one is especially big,eye doctor said it looked like a small ufo..hahaha..sorry they keep changing you..but do let us know what he/she thinks
My opthalmologist told me that cateracts in younger people are found frequently with auto immune disorders,good luck with it all. I had a cateract operated on at 33 and il have to have the other one done this year probably im now 36. I have been to london and been told my 'floaters' are in fact snow vision, and i also sometimes get blue flashing lights in the corner of my eye,and after images
So the blue fairy lights are normal for us then? I thought it was just me. I've found pain in my right eye increasing too ... like I've been punched in the eye.
The only way i can describe it is ambulance or police flashes-ive asked my husband three times if an ambulance is outside! Not sure if this in particular is aps related as im waiting to go to moorfields eye hospital to learn more and have more tests x
I hope you find the answers that are beneficial to you. I can't wait to see what my ophthalmologist says in April. I just hope they don't change my appointment again.
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