Amaurosis Fugex

[Lind8]

Hi I just wondered Is it possible or has anybody still had symptoms such as loss of vision when INR is in range ?

[KellyInTexas Administrator]

Yes.

I think with all that’s happening right now with you ( by the way perhaps an update if/ when you are up to it) a referral to neuro opthomologist would be a great idea.

This is what my neurologist did for me.

My neuro opthomologist said the antibodies themselves ( the proteins) can change the viscosity of the blood and make it thick, affectiting the blood in the vessels of eyes-

[Lind8 in reply to KellyInTexas]

Thank you so much Kelly, that makes sense.

I will pm you update.

I am under eye hospital but not due to see them for a month. I always knew when my INR was low as always had episodes of losing my site, but now it happens even when in range or when low & on bridging injections.

Was just concerned about it being pre warning of another stroke, but am well within INR range so was a bit baffled

I will go back through eye hospital & Heamotologist & try & sort an appointment

Thanks again

[KellyInTexas Administrator in reply to Lind8]

Linda,

It might be a warning of another stroke.

I would call your neurologist right away and let them evaluate you. Better safe than sorry.

Remember, I’ve never had a full stroke.

Please take full proactive and preemptive measures.

[GinaD]

Have you had eye surgery in the past? I know from a friend's experience that this can result from scar tissue resulting from previous eye surgery.

[Lind8 in reply to GinaD]

Hiya

I have had eye surgery on my left eye & extensive laser treatment too because of the TIAs in my eye,

This is effecting my right eye too & symptoms come & go and either lose vision completely in one eye then it comes back or like a curtain across part of my eye.

Symptoms seem the same as when my INR is too low but are happening even if INR in range. I’m waiting to hear If Heamotologist now but if not I will phone eye hospital instead . Thank you for your reply hope all good with yourself.

[Lure2]

Hi Lind8,

One month ago you spoke to APsnotFab who suggested you should try to get your INR in range.

It can be difficult to keep your therapeutic level of 3.5 - 4.0 in INR with Warfarin especially if you are positive to Lupus Anticoagulant.

Hope you have got a Specialist of APS who works with people like us. He could agree to let you selftest rather often as it is easier to see when your INR is too low and also feel the symptoms. The fingerprick is usually a bit higher than the vein-value taken at a lab and that is what counts. Also several parallelltesting to know how big the difference is and when you know that well, you can start selftesting.

It helped me to loose my neurological symptoms and especially Amaurosis Fugax.

[Lind8 in reply to Lure2]

Hiya

I do self test already & have 2x weekly blood draws at GPs . My INR has never been stable, but it is even more erratic than normal at the moment. 7.5 one day, 2.1 the next, then back up to 5 the day after, but I have been on steroids, platelet transfusions, antibiotics & new epilepsy meds the past few weeks which I know will not of helped the situation.

I have been back on normal meds for one week so was hoping things would of started to settle down. It’s just I am having eye symptoms regardless of where my INR is at.

I have phoned my consultant today so hopefully will hear back soon. Hope you are keeping well

[Lure2 in reply to Lind8]

The blood-draws at your GP is that in the vein or in the finger as you also do at home?

The vein-value is often lower and only the vein-value you can count on!

Did you loose your vision like me on the same eye every time? Is your Counsultant a Neurologist and does he also agree with you that they are TIAs as you mention?

You must have a steady level also to be symptomfree. I doubt that you have been steady and high enough to get rid of those phenomens.

[Lind8 in reply to Lure2]

Hi

They are blood draws from vein at drs.

Surprisingly my finger one is always slightly lower than vein one..

I always used to lose my sight in my left eye for many years & ended up needing surgery as my eye grew new vessels which kept haemorrhaging.

This has now started in my right eye ( awaiting laser treatment on right eye now) but has been happening even if INR 4, or when less than 3 & on bridging injections.

I am under a Heamotologist & eye hospital at moment & awaiting an apt at neurologist

You are probably right that my INR is too erratic at the moment to fully get rid of any micro clots

[Lure2 in reply to Lind8]

I did not think you could do the vein-draws at a GP as I have learnt it should be taken at a well recommended laboratory like a hospital as it must also be tested very quickly after it is taken.

As I am not a Doctor I can only answer on the things I know and have read about from own experience. We learn a lot from others on this site. Take good care.

[Lind8 in reply to Lure2]

Hiya

I live in a remote area ( at least an hour by car to any hospital) so my bloods are taken at my GPs then picked up & taken to the hospital to be tested.

Thank you for your replying

[Lure2 in reply to Lind8]

That sounds very good!