Double vision glasses? What other Meds help you?

[Medically_confused]

Do prism glasses work for APS double vision? Also, other than blood thinners, what meds are you on for APS?

[Ozchick]

Is it permanent double vision or intermittent? Could be worth asking an optometrist ?

[rach1081985]

Prisms sometimes work sometimes they suggest botox injections to help depends on severity of double vision... Message me if you want mire info xxx

[Lure2]

Double vision is one of the most usual neurological symptoms of APS. You have got Antiphospholipidsyndrom I assume?

We have too thick blood which has to be thinned usually with Warfarin at a stable and rather high INR-level.

An Ophtalmologist is an eye-doctor who may know about APS and the eye as too not enough blood-supply to the eye. Talk to your Specialist about this. Do you take anticoagulation for your APS?

Also read "Sticky Blood Explained" by Kay Thackray. She had a lot of problems with APS and eyes. A good book!

[lupus-support1 Administrator]

You need to see an ophthalmologist ie a medical doctor who specializes in the eyes and not an optician.

With good wishes,

Ros

[MaryF Administrator]

As mentioned already, you need the right medical professional to look at your eyes, and you also need another specialist who fully understands Hughes Syndrome/APS, We have a list of them over on the right hand side of the forum, under 'pinned posts' and also on our charity website: ghic.world/ Sometimes the right INR setting can make a world of difference to how an individual feels in terms of their symptoms, which is why you need a specialist who fully understands the condition, not one who half knows! MaryF

[Medically_confused]

Hi all, thanks for replying. My rheau specialist is on the list of those who know about APS. He’s the one who flagged it to me. I just can’t ever get hold of him as he’s so busy! I’m just on low dose aspirin for now because although the lupus anticoagulant tests always come back positive, I’ve not been treated for a blood clot and not yet tried pregnancy. I did see a stroke specialist as I have a mark on my brain that looks like an old stroke but he said the mark could have been caused by a fall etc. He cleared me for future risks. The double vision isn’t constant but happens every day. The sticky blood issue has mostly been taking a back seat while we try to sort out my other 2 conditions but at my next appointment in October I will ask my specialist to do the other 2 tests that give a number rather than just neg/pos outcome. I was diagnosed with Psoriatic arthritis 10 years ago but all my scans come back looking normal (no inflammation) and dmards seem to have limited to no benefit (tried nearly all of them). I did have a great response to prednisolone but I put on so much weight that I refuse to have anymore courses. My specialist is still investigating the arthritis, even after 10 years! I found your forum by chance and have used a link that was in one of the threads to study up more. I get the spider rash thing all the time on hands, upper arms and around my knees. It’s faint so I’ve never really looked into it and didn’t realise it was connected. I have also had hemiplegic migraines. Headaches are every day and migraines very frequent (I’ve also got fibromyalgia so headaches, migraines & brain fog is pretty bad). I’m now wondering if the joint pain is also caused by the sticky blood too. Is it common to have all the symptoms barring major blood clots? (Obviously we don’t know how much trouble I’ll have with pregnancy until I try). I read that some can have it for years before clots but can’t remember where I read it lol. There’s been so many complications over the last 10 years that it’s been difficult to keep up. The sticky blood issue has been really down-played by my drs, as soon as the stroke specialist said I wasn’t high risk, it’s just been swept under the rug. I’m now wondering if my “Psoriatic arthritis” has been APS all along. Frustrating having 20 mins with your specialist per year with so many issues to cover, it takes years to get somewhere. Since being on aspirin (3 yrs ago) none of the symptoms have improved. I can’t remember if I’ve even told my specialist about the rash & hemi migraines so I’ll make sure he’s aware of it all when I next see him. Just want concrete answers. My health has declined so much over the years and I’ve been mostly bedbound since Christmas because I can’t sit or stand for very long. Sulfasalazine seems to be working a bit because I can now sit for 1 hour but I’m wondering if I should be on hydroxycloroquine instead (I may have even tried that one already). I have found more answers here than from my specialist. Thank you all.

[Fra22-57]

Before you go in October write all your symptoms down and then you wont forget.be firm but polite and stress how much you need help.once a year seems a long time to wait thou I had to wait 14mth this time and was twice a year.was even every 3mths at one time

[Lure2]

You must have a new contact with your Rheumatologist who diagnosed you as soon as possible. He knows APS you say. Hope so. Aspirin is not enough. You have got Sticky Blood that may engage so many organs. Read that book I suggested! See ghic.world/ as MaryF suggested also.

[GinaD]

I have a mild case of strabismus. I can not wear bifocals, so I need to juggle 2 pairs of glasses each outfitted with prisms. Related to APS???? I was mildly cross eyed as a child long before a y blood clotting issues. On the other hand, it was my eye doc who first suspected APS based on something he saw in my retina. So, again. ????

[ELlieRL]

I take Plaquinil, to hopefully reduce , inflammation episodes caused by Lupus, although, I don’t have active Lupus. I had prism glasses for vision therapy, post stroke. I don’t know that they would be pleasant to wear all the time in anticipation of a double vision episode. Besides double vision, is a symptom of the INR being too low, unless I misunderstood what you were asking.

[Medically_confused]

aps-support.org.uk this website lists my specialist as apparently being one who actually knows about APS. He told me the double vision is being caused by my sticky blood but when I saw an optician they didn’t know about it. Dr Kaul also said aspirin should help it & the brain fog but it’s not improved at all.

I have very mild prescription glasses that I use for screens. Prism glasses were mentioned to me by someone who knows less about APS than I do but I thought, if they do help with my double vision from the APS, perhaps I could get a second pair of glasses that I wear when I get the double vision. I get it everyday but it is not a constant (tends to get worse throughout the day).

Once upon a time I saw my specialist every 4 months. Now it’s twice a year but it’s only for about 10 minutes each time. As he’s still trying to find successful treatment for my “arthritis” a decade on from being diagnosed with Psoriatic arthritis, that is his main focus but I am now wondering if the joint pain is just the sticky blood. It would make sense. Little success with all DMARDS I’ve tried but great response to steroids, all scans clear but I’m crippled up from arthritis like joint pain? I’ve been fighting for action for the arthritis as he’s still not sure what it is, I’m just realising now that I should be asking him to focus on the sticky blood and investigate the idea that perhaps I just have APS & fibro and my mysterious arthritis could be the APS. I just never knew that it could cause joint pain because the nhs website doesn’t say that and none of my drs ever have either.

Thanks to this forum I now have new hope and a new direction to focus. After being bedbound for so long, it’s nice to know that when I’m back on my feet, I have a new lead to follow. If I can follow this trail & get better treatment for the APS, who knows, perhaps my 30s will be healthier than my 20s! Here’s hoping. I’ll obviously keep researching in the books and other info sources that have been mentioned on here. Thank you all again.