Hughes and eye conditions

[Jolevans]

Hi does anyone else with Hughes syndrome have eye conditions? My eyes change every time I go to the opticians and I was warned that either the condition or medication, I'm currently on Warfarin, could be a contribute. This time the optician has referred me on to the hospital.

[MaryF Administrator]

Hi are you still under Professor Hughes, and also any of the other recommended specialists? It would be very good if the actual Optician wrote to them, rather than just the hospital, to help the dots join up. MaryF

[Jolevans in reply to MaryF]

Hi yes still under Professor Hughes. Although I don't see him very often.

[Jolevans in reply to MaryF]

Was just curious what sort if eye conditions to expect.

[MaryF Administrator in reply to Jolevans]

Hi, I am just sending you this, hughes-syndrome.org/about-h... Also of course, some people have dry eyes from Sjogrens, also at times in rare circumstances eye changes due to various drugs such as Plaquenil, but this is not often, however those on Plaquenil or similar are advised to have regular eye checks. MaryF

[Yllek]

Hi

I had lots of issues with both my eyes prior to diagnosis. I was referred to a neuro-opthamoligist who diagnosed me with optic neuropathy. At the time they didn't know how it occurred but now they say it was caused by microthrombosis. However since starting warfarin I don't have any further issues, just need reading glasses for the damage that was already done.

Kelly X

[Lure2]

Hi,

I agree with what Kelly is saying. I have had exactly the same history with microclots and after Warfarin no more neurological symtoms.

If you are on Warfarin I wonder if your INR is steady and high enough. I selftest with an INR between 3.2 - 3.8 and feel best at 3.8. If I go under an INR of 3.0 I have to take a Fragminshot.

Best wishes from Kerstin in Stockholm

[hanbur]

Hi there, I am 32 and have Hughes. I recently had a cateract removed from one of my eyes. Not sure if its linked to the Hughes or not.. but I can empathise with the eyes changing each time at opticians. Such a pain and expensive too!

[Good4u in reply to hanbur]

Hi hanbur, I am 46 & have a cataract as side effect from high dose prednisone. It is slowly getting worse. Just curious how good your sight is after the operation? Thanks, carmeb

[hanbur in reply to Good4u]

Hi there Good4u

My cateract wasn't caused by meds. However, I'm guessing the result will be the same. My sight in the eye with the cateract is better post op than it was before I got the cateract which is lovely. You do loose the ability to 'accomidate' which in real terms means you cant focus far to near/near to far and that's a bit of a pain, but you get used to it. I know I can see far away or close and just don't try swapping between the two! I'm told if you have the opp in both eyes they give you multi-focals which makes life much easier.

Good luck with it!

Hannah

[Good4u in reply to hanbur]

Thanks Hannah, appreciate your feedback. Gives me something to think about.

[kittymum78]

I have problems with my eyes but have been diagnosed with Hughes syndrome since my last opticians visit as I also have fibromyalgia the optician said it was that causing the problems but I am due an eye test in a couple of months so will have to see what they say about the Hughes diagnosis. Hope you get some answers soon x

[luisal]

Hi Jolevans,

Thanks in advance for your open question linking eye conditions and APS. I do have changing eye conditions. Some of them happened prior and others after being diagnosed with APS. Up to now neither of the specialists consulted have connected dots between APS and eye conditions in my case. Good luck and please do share with us the results through the forum.

[Davideccroft]

I had a clot in one eye leading to a central retinal vein occlusion so I don't really see anything useful through it now. This led to me being diagnosed with APS. My eyesight has got worse recently in my good eye but this is probably me getting to my mid 40's more than anything. I do hate being in very bright sunlight as my eyes water a lot especially in hot countries. I had a trip to Dubai a few years ago where I spent several days trying to stay in shadows to avoid constant streaming eyes.

[panda60]

I have worn glasses for nearly 50yrs and am lucky if I get more than 2yrs out of a prescription which is proving very expensive as I need ultra thin lenses. Had my latest pair for two years and having my annual check on Thursday. I feel that I am seeing ok through my current lenses, so hope they are ok for a while, but usually when they try me with different ones find I can suddenly get a better view of the world!! I have found also in the past that my eyesight can change quite quickly. I was diagnosed with Hughes in 2001 and fibro in 2011 so don't know if any connection.

One thing I have noticed though is that when I changed from the optician who uses computerised eye testing to one who uses the old fashioned method with the funny glasses is that I get much better long distance vision. I think that is probably because you can walk around to see how it feels rather than just looking at a chart.