APS & Vision

[Squiz66]

Hi, can anyone advise if APS can affect your eyesight I had an eye test last year and just lately feel my sight is getting worse.

[Lure2]

Hi there,

APS affects the vision rather often. It did for me.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms especially very good details about her bad vision before she was anticoagulated. I started Warfarin after I had read that book.

I do hope you have a Specialist of APS which is exstremely important for us.

You have a rather high INR up to 4.5. (I read that from your last question.) That is good as we usually do not bleed but clot from APS. I am not allowed to go over 4.0 though. I selftest.

Try to selftest if it is difficult to be in range and the INR drops. Also make notes of everyting around your INR-testing and Warfarin intake. Exercise, new drugs, viruses, stress etc etc.

Do you have Lupus Anticoagulant?

Do you have a bad vision even if you are at 4.0? I can understand if it happens when your INR drops like a bomb but not when you are in range at a STEADY level.

Best wishes from Kerstin in Stockholm

[Squiz66 in reply to Lure2]

Hi Kerstin thank you for your reply, I am just coming to terms with the different issues that are arising from being diagnosed with APS, I have a Specialist at the Hospital, I already self test as I needed to go back to Work and this was the easiest option but now I am having to go to hospital with many issues that have arisen from being diagnosed that work is not an option at the moment. I am at the moment stable but suddenly my INR drops and leaves me in terrible pain usually in my Left Elbow where my Blood Clots developed. I have heard of Lupus Anticoagulant but know one has said anything about this to me at times I feel quite depressed not knowing all the issues that go with APS but I will look for the Book you suggested in you r reply.

Regards Tanya in Birmingham

[Dot69 in reply to Lure2]

My INR has to be between 2-3 preferably 2.5 which took along time to reach but I got there and have remained for 3 months. I watched the amount of veg I ate and omitted certain ones with a lot of vitamin K . I exercise a lot and run races and always feel so much better for a couple of days after. So strange

[Lure2 in reply to Dot69]

Hi there again beautiful woman!

Yes, I just have to take a walk for at least half an hour each day and do extra "gymnastic movements" on the floor a couple of times each day. Probably we need it for our blood to flow nice in our body. I do not know but I think it raises our INR and thins our blood.

But you have a low INR though. Hope you have a Specialist for your APS. If that is not the case look for one! I must be over an INR of 3.0 otherwise I feel bad and have to take a Fragmin-shot.

Hope you can continue for a long time to exercise and run races!

Good Luck from Kerstin in Stockholm

[Dot69 in reply to Lure2]

My running keeps me sane😊 and as you so rightly say it keeps the blood flowing. My heamotoligist wanted my INR to be 2.5 who I see quite frequently my neurologist also is quite happy but to go a little higher than 3 is not a worry.

[Lure2 in reply to Dot69]

I am triple-positive with high titres and have also Lupus Anticoagulant and we are known as high-risk and often need a higher INR to avoid thromboses etc.

It is individual but most of us need an INR around 3.5 to feel ok.

Kerstin

[MaryF Administrator]

HI, you have had a great reply from Kirsten, I hope your specialist can see you again to help you with this. MaryF

[Squiz66 in reply to MaryF]

Hi MaryF

Thank you as I said to Kirstin it is taking a lot of coming to terms with I didn't realise that APS was so complicated. Tanya

[suntap]

Hi

Yes I have vision problems with my APS, I have blurry/double vision most days and the strangest thing is the way it affects my night vision. Once I turn the lights out it is complete velvety blackness. My eyes do not adjust, there is no light and shade and no difference between eyes open or closed.

The optometrist and ophthalmologist found nothing wrong. I have had all sorts of tests done and am waiting on a report from my specialist - there is damage to my retinas. I am on rivaraxoban and have not had any reduction in my symptoms.

[Karen56]

My Optimologist said it is common people with autoimmune disorders do you have moisture problems in the body. Of course that affects your eyes when your eyes are dry they are blurry. There are lots of drops to help that. Also if you are on plaque when L it can leave deposits on your right now overtime. You need to have that checked at least once or twice a year.

[Lure2]

You have a Specialist and a diagnose and you are on Warfarin and selftesting. Sounds good so far and you will also feel better as soon as you get the INR more stable and know a little more about APS. This site is very good so stay with us.

It took me 9 years before I started Warfarin and was without new symptoms. We have to get our blood thinned. That is the main question. i wish I had known all that from the beginning. This illness has only been known for 30 years.

Good Luck from Kerstin

[Hidden]

Your vision problems should be thoroughly investigated to rule out normal aging/vision changes vs. neurological (brain) and/or retinal APS related problems from sluggish circulation or even tiny clots in the eye circulation (retina and underlying layers). If you are taking plaquenil it would be important to tell the prescribing doctor that you are experiencing vision problems as this medication has known central retina side effects. Thorough investigation to identify cause and be sure there is no need to modify any meds.

[Debbweb01]

Yes please check for Sjogrens Syndrome to! I went thru all this and have an amazing eye specialist that knows exactly what APS is, which here in NY, USA is very unusual! He tested me for Sjogrens and came up positive! I went thru a series of tests because my eye doc wanted me to find a Rheumotologist to put me on Plaquinil! It tuk me at least 6 months to find a Rheumy and he's stating me on Plawuinil which I shall start today! I must return to my eye specialist Indic months to be retested with these special eye tests and if any changes he said I'd have to go off Plaquinil! This med can do damage to ur eyes! I go thru exactly what u have described to a T! The darkness is like being blind! My eyes neve adjust fast enuf for me to the light! Try wearing sunglasses even when sun not out! My eye doc told me to do that! Good luck and Godspeed!!!