CAN APS AFFECT EYES?

[mozelle]

I have had a vision problem with right eye for just about 8 years. Several Ophthalmologists did periodic cat scans of retina, optic nerve, macula, cornea--all come out ok. Have had several refractions for eyeglasses, yet, no matter what prescription they give me , vision is still distorted and blurred in eye. They now treat me as if I am making it up and ignore me. , I was just now diagnosed by a hematologist with APS in February, and also Factor V Leiden after suffering a series of DVT blood clots in leg. I had to inject with Lovenox for 30 days and am now in Warfarin daily. Any suggestions as to who I see to look into this eye problem ?

[Lure2]

Yes it can affect eyes.

I had a lot of problems with my eyes before Warfarin All my neurological symtoms and eye problems disappeared when I started Warfarin

When did you start warfarin? What is your therapeutic range? Is your INR in range and are you beeing tested often enough?

Best wishes from Kerstin in Stockholm

[emmaj]

I suggest you see a neurologist,my problem was neurological rather than eyes, sticky blood can affect the blood flow and the brain is a particular target - i had the same problems and understand your frustration - my neurologist said my eyes are healthy its the brain signals from eyes to brain, bu nothing to suggest i will go blind - good luck xx

[emmaj]

i started aspirin alongside warfarin as its stops the platelets sticking and it helped a lot

[Lure2]

I had a neurologist to begin with but they are not so good to understand this illness. Look for an APS-specialist that understands that it is not the eye but the brain that is affected and that you need to be anticoagulatied.

Best of wishes from Kerstin in Stockholm

[beautymonster85]

Short answer, yes. My INR (blood thickness) actually dropped to a 1.6 once (1.9 is a normal person without APS) and I woke from a nap with my baby sleeping in my arms without vision in my left eye. Scariest thing ever! Thinned my blood back out in the E.R. .and it went back to normal almost instantly.

[Lure2 in reply to beautymonster85]

Hi, I have also had that several times. When I started Warfarin no more. You are so right that you must be correct anticoagulated. I got scared each time. Doctors take that serious.

Best wishes from Kerstin

[Debbweb01 in reply to beautymonster85]

On 3 blood thinners including Warfarin, I went down to 3.39! Nice! Now up to 3.39! I just went up to 2.9 & they stopped my Lovenox and this is an APS SPECIALIST! I'm sik of all docs and just wana be me again! It's all a big guessing game that I just don't want to play!!! I am sooooooo tired of it all!!! I wish u the best with ur eyes! Just keep after them constantly cuz they're ur Eve's not theirs!!!? Prayers r with you my dear!!!

[bcod]

Clotting and or bleeding can affect vision at any place between the retina and the visual cortex . So to evaluate vision symptoms......retina specialist for the eye itself......and neuro for cortical problems. Retinal tests: OCT scan, ICG and flourescein angiography. Neuro: mri and mra...or plain old angiography if you must.

[GinaD]

Hughes can effect the eye proper,or, as it did me, the visual cortex in the brain via a TIA/mini stroke. The hole in my visual field was documented via a "visual field test;" I stared at a spot in the middle of a white screen; then pushed a button whenever I saw another spot appear somewhere else.

But I must say, the opthamologist who ordered this test had thought I had Hughes Syndrome for the previous 10 years. (He was dismissed by other physicians as "thinks he knows everything because he/s just out of med school.") The opthamologist kept ordering cardiolipin antibody tests, but the results kept being "mislaid," Eventually, I found the results and they were all strongly positive. (And now those results have been "mislaid" again! I was so naive to believe that THIS TIME my new doctors would not lose the blood work!)

But anyway -- if the clot damage is in the brain it will effect your vision, but your eyes themselves will appear normal upon examination. Only the visual field test will document a persistent inability to see using a specific part of your brain.

[Davideccroft]

I had a blood clot in one eye which led to a central retinal vein occlusion caused by APS. But diagnosed quickly when the local optician saw me coming in with blurred vision. Looks like a volcano when they look at it.

Now I see mainly just through my non dominant eye so get eye fatigue if I have a long day in front of a computer.

Before I started warferin. I had blinding headaches. They often started with eye strain. I also now wear glasses which helps for reading.

[Lure2 in reply to Davideccroft]

Sorry to hear that. Has it improved with Warfarin?

Best wishes to you from Stockholm and Kerstin

[luisal]

Hi Mozelle

I don't have any suggestion myself but have a lot of problems with vision and am very interested in the possible connections between APS and eyes. Just as you doctors have mistaken symptoms in the past.

All my best.

[mozel]

thank you all for responding. I started warfarin beginning of March. It's now 3 months and I keep getting tested weekly-my INR runs anywhere from 1.77 and the highest was 2.9. My dr. wants it between 2 and 3, but closer to 3. Today, I finally got a decent reading 2.4. The ophthalmologist I have been using the last year is a retinal specialist, but he still dismisses my complaint about the distorted vision in my right eye. Last visit he said, start of a cataract--let's remove it and see if that is the cause. NO WAY!! I don't want him experimenting--Now that I have APS I started researching on internet and on this website and see that others have the same problem. I am also on an 81mg aspirin daily. It hadn't occurred to me that it could be neurological. I will speak to my internist and see what he recommends.

[Lure2]

Your INR readings are too low!!.

If you want some help with your APS the warfarin must be kept higher! 2.9 is a good start .Stick to the same food and do only small changes with the tablets. I never change tablets only eat a little more or less broccoli or brusselsprouts (small amounts!) But then you must not change the tablets at the same time.

Test yourself with the K-vitamin but only very small changes .Make notes! That is how you learn. I am so lucky that I live in Sweden and can selftest here. I cheque every second day. That is why I know how the INR changes epecially if you also change your warfarin tablets.

I hope you have got a good APS-doctor. Ask the doctor that you want to be a bit higher so you can notice if your eye-symptoms may ev be better or go away. Have you noticed any change to the better after you started anticoagulation with warfarin?

We learn from eachother. That is why I ask you. You shall absolutely listen to what APsnotFab has told you! She knows this illness.

Best wishes from Kerstin in Stockhom.

[mozelle in reply to Lure2]

Thank you so much for responding. I really don't see a change in my eye and I'm on Warfarin since March 5th. Is it possible that something happened in the past due to the APS, but was never diagnosed and now caused permanent damage? My current ophthalmologist is a retina specialist but I haven't seen him since my diagnosis of APS and Factor V Leiden. But he is the one who, after a series of tests these past 2 years, started dismissing it as if I was imagining it. He is the one who said maybe start of cataract, lets remove it and see if vision improves. It is very frustrating. Then he tells me my vision is fine-his optometrist who does the refractions tests me, and says you have to use both eyes-I know that, but my right eye vision is distorted and it hampers my vision. I guess I'm going to have to find another retinal specialist--or maybe give my current doctor a chance and I see tell him of my diagnosis of APS. Then maybe, he can examine me differently..

[Lure2]

As i said earlier. You must try to get the INR higher!

1.77 in INR is quite too low! How often do they test you?. You mest tell you APS-doctor to let you get up to at least 3.0 and have it steady there. This can be very important for you! If you have an APS-doctor he would understand.

Best wishes from Kerstin in Stockholm

[mozelle in reply to Lure2]

Hi Lure2

Since March 5th I have been tested every week because the numbers keep going too high or too low so they keep adjusting it. I've been as low as 1.77 and as high as 3.8. The last 3 readings, 3 weeks ago were 2.0, then 2.4, then 2.6. With the last 2.6 I was told to come back in 2 weeks. My hematologist said he wants between 2 and 3, but closer to 3. I go in this Monday for another test. My cardiologist who I saw last week took me off the low dosage aspirin. He said he doesn't want me to take it with the warfarin. My warfarin dosage is now 2 1/2 mg daily.

When I was first diagnosed with APS and Factor V Leiden in February, I asked him if the eye problem could be related-he said if I was going to a good retinal ophthalmologist, he would be able to see what's back of the retina. But now reading all these posts, I am reading that it may not be the eye, but may be the brain. It is getting to be mind boggling. I also am reading all the posts, and it seems that so many symptoms could be related to APS. I am still trying to digest all of this.

[Lure2]

Hi again,

Read what APsnotFab told you 10 days ago about what you could rule out!

Read "Sticky Blood Explained" by Kay Thackray. You can get it from the Charity web site here. It is a pocket and do not cost so much .I learned so much from that book.

APS is also called "Sticky Blood"-disease. We have too thick blood. We get a lot of clots if we are not well enough anticoagulated.

There are several drugs to make the blood thinner. Choose one, but see to it that your APS-doctor understands this illness.

I selftest on warfarin and never change my tablets. But I change it with different amounts of broccoli or brusselsprouts (K-vit rich vegetables). I am most of time at 3.2 - 3.5 of INR But I remain on this range and do not go up and down. That is not good. You must test every week and keep at least 2.8 - 3.0 in INR. .

I can understand that having a doctor that does not understand APS and try to be on a constant range with your INR when they do not allow you to reach the perfect range and test so selldom that must be difficult.

Fragmin could perhaps be something for you.

Best wishes from Kerstin

[mozelle in reply to Lure2]

A friend who is involved with the Lions Club eye research spoke to a Neuro-ophthalmologist who is a colleague of his about my eye problem, and my APS and Factor V Leiden. I live in New Jersey and the doctor is also in NJ. He told my friend to have all my records, tests, etc sent to him for review, and after reviewing, he will notify my friend if he wants to see me. The doctor told him that he has made the connection of APS and eye problems quite a long time ago. I signed a release this week with my current ophthalmologist to send the records. My current ophthalmologist does not yet know that I was diagnosed with APS and Factor V Leiden this past February because I am not yet due for a visit with him. I will hold off until I hear from the Neuro-ophthalmologist--hopefully, he will have some answers for me.

[Lure2]

Hi there,

So good that you continue and do not give up. But have I forgotten or do you have an APS-doctor now?

You have to talk to someone who understands this illness. We have found (several on this site) that the neurologists do not understand this illness so good.

First of all try a higher INR. Have a steady 3.0 for some weeks and see if it has to do with too thick blood.

I have a copy in front of me saying: "Looking into the Eyes of patients with antiphospholipid syndrome" by D Yehudai, Y Shoenfeld, E Toubi.

The last sentence: "Anticoagulation is aimed to prevent recurrent ocular or cerebral thromboses"

We have too thick blood. Some of us have thicker than the others and perhaps need more anticoagulation. I am not sure this has to do with you but why not try at least.

I only know that my eyeproblems were over after I started warfarin.

Best wishes and good luck from Kerstin in Stockholm

[mozelle in reply to Lure2]

Hi Lure2

I think you were responding to my post about the Neuro-ophthalmologist--My hematologist who diagnosed the APS and Factor V is the doctor treating me for these conditions. I am on warfarin and have been going to this office once a week for PT/INR since March. I assume he is an APS doctor. Please tell me if there is a difference--he is hematology/oncology and said he will treat me for it. By the way, this week INR was 3.1 and he said that is a good number for me. He would prefer between 2 and 3 but closer to 3 and he was happy with it. I am still waiting to hear from Neuro-oph--I don't know if he received records yet.

[Lure2]

Hi, An APS-doctor is a doctor that is perhaps a Rheumatologist or a Hematologist. The Neurologists we have found do not understand this thick blood problem we have.

An APS-doctor is a doctor that knows what APS is. There are so few of them. The Foundation has a list with all the doctors that are APS-doctors- It is vital to go to such a doctor to have the right treatment. APS is difficult because it involves all parts of the body and thus I have been to 8 - 10 different doctors but on the advice from my APS-doctor who cares form me and my illness. Hope you could understand me. Swedish is my language.

I have 2.5 - 3.5 in INR but selftest and aim to be at 3.5 where I feel best. 3-0 in INR is quite OK but do not go under that number. Your doctor thought you should be near 3.0 That is good. He sounds as if he understands.

When i started warfarin my Eye-problems disappeared. Good luck!!

Best wishes from Kerstin

[mozelle in reply to Lure2]

Hi Kerstin

Thanks so much for your reply. I feel since my hematologist diagnosed me, he seems to keep on top of it. He is hematologist/oncologist in an Oncology practice with 6 other doctors. He is certified in both hematology and oncology but told me this week that just about 60 to 70% of the patients he sees are for hematology. The rest for oncology. When I had my first visit with him end of January, he sat with me for 45 minutes just taking my whole medical history and my family history as well. He then examined me, and they then took 16 vials of blood. I believe he knew exactly what he was looking for before he even got the results which he explained to me 2 weeks later. He is very caring so I'm hoping I am getting the right treatment. The only thing that I am a little uncomfortable with is I have been going weekly for PT/INR tests since March, and now after this reading, he told me to come back in 4 weeks. Should I wait that long? I feel a lot can change in 4 weeks.

[Lure2]

Hi, That is a very long time. Too long time in comparison with 1 week I would say. Have you been very stable - been on the same good target every time you took your INR test? Do you often change the amount of the warfarin tablets? Are you eating the same amount of K-vitamin vegetables every day?

If you answer these things I can better understand why he wants you to test every 4 weeks.

I can only answer from my own experiance.

Best wishes from Kerstin in Stockholm

[mozelle in reply to Lure2]

Hi Kerstin

The readings for the last 6 weeks---1.71, (changed dosage), 2.0--, 2.4--, 2.6,-- 2.3, then after 2 weeks --3.1. (first time that they said come back in 2 weeks) After the 1.71, he increased to 2.5mg for each day and then I got the better readings. (I was on 2 for 2 days and 2.5 for 3 days each week) I kind of changed my whole way of eating since I was diagnosed--I cut out ALL dark greens--broccoli, spinach, collard greens, and dark lettuce. I have a small salad each day of iceberg lettuce, still eat my peas and carrots, --I'm a big veggie eater--but I really stopped all the high K's and kind of miss them.

I don't know if I am doing it right by eliminating all the high K-vitamin veggies but that's what I've been doing. I also have enjoyed wine with dinner a couple of days a week with friends, and both my hematologist and vascular doctor told me that it interferes with warfarin and I can only have a glass of wine occasionally. Am I being too strict? I know this is for the rest of my life and maybe I should consider eating more K's and just going on a higher dose of warfarin.

Also, I have my internist appointment in 2 weeks-I can ask him to test and not wait the 4 weeks.

Thanks and best wishes to you,

Mozelle

[Lure2]

Hi, Yes you should be around 3-0. The internist should follow your diet. Eat the SAME amount of broccoli or brusselsprouts EVERY DAY. Then they must increase your warfarin dose. It is good for the warfarin and the body with all the green things. If I want to reduce my INR (like today) I eat 8 brusselsprouts in the morning and then the next day I have a lowered my INR. It goes quicker to change the INR with the K-vit veg than change the tablets. That takes 2 - 3 Days. It is individual of course also. We are all different but i have heard others here say the same.

I am 70 and I drink one (obs ONE!! ) glass of wine EVERY day for dinner. That is constancy also. A wellknown APS- doctor told me 10 years ago that I should drink one glass of wine every day for dinner.

They must do a close monitoring (at least every week) if you start to eat K-vit rich vegetables quite suddenly. So it can be difficult to make the change without going to the lab more often. The best thing would of course be if you could selftest at home.

Hope this could help you a little. It looks like you INR is not going up and down so much but that is perhaps because you try to eat the same food. Did you not notice some change in your vision to the better when you were at an INR of 3.1?

I think you should try to find an APS-specialist on hughes-syndrome.org/se.... selfhelp/specialist in your area.

4 weeks to wait to a new lab test sounds scaring as you are not stable at all. I can not say more I am sorry. I am only talking from my own experiance but this is diffucult.

Best wishes from Kerstin in Stockholm

[mozelle]

Hi Kerstin

You have been so helpful. I am going to take your advise. As I think about it, I can't see eliminating the foods that I have been thriving on these last 20 years or so--(I stopped eating red meats about 25 years ago, and became a big vegetable eater-I do eat fish, though). I believe my hematologist specializes in APS so I will stay with him--but as I said, I was surprised that he told me to re-test in 4 weeks. This is the first time he did this. I'll make sure I get tested in 2 weeks by my internist. And I'll gradually go back to my K-veggies, but as you said, to be consistent, and then see how I do with my INR..

Thanks,

Mozelle

[mozelle]

I added my parrot CoCo's picture to my profile.

Mozelle

[Lure2 in reply to mozelle]

Yes, I noticed that. Lovely colour and CoCo is a name you do not forget.

Do it slowly and make notes. Good luck from Kerstin

[mozelle]

I see my internist this coming Wednesday, (July 30), not related to my APS. He sees me every 3 months to monitor blood pressure, etc. This will make it 2 weeks since my hematologist office tested my INR. The doctors don't usually like to interfere with another doctor's treatments, he once refused to test me and said the hematologist is treating me for the APS and he couldn't do it, but the nurse in his office is very kind and I know she will test me before the doctor sees me. I'll explain that I can't wait 4 weeks for a test and if he is uncomfortable with it, test me, and send results to my hematologist.

[Lure2]

If the hematologist you visit has told you to wait 4 weeks to get an INR (1 week before that) I doubt he is an APS-doctor!

If you want to be right treated for this illness you must look for the APS-specialist I told you about earlier!

Try to be over 3.0 (at least) steady for several weeks and see if your Eye-symptoms and APS-symptoms improve.

Best wishes from Kerstin

[mozelle in reply to Lure2]

Hi Kerstin

I saw my internist yesterday, July 30--I convinced him to test my INR--it's good, 3.2 (this is after the last one 2 weeks ago by my hematologist, which was 3.1) So, I was pleased with it and didn't change any dosage of warfarin. As far as the neuro/ophthalmologist, he did not receive my records from my opththalmologist--It seems they faxed them to him, and we don't know where they landed up-So they are now mailing them to him. He will see me after he reviews them next week.

Thanks for all your advice and information.

Mozelle

[Lure2 in reply to mozelle]

Hi Mozelle, It is quite a job you have been doing. Try to stay at about the same diet that obviosly goes well with your target range.

Ask for a copy of your papers. I Always do that. Then you know (also bad memory sometimes, right?) what has been arranged and said.

Please let us hear how it goes.

Best wishes to you from Kerstin

[mozelle]

Hi Kerstin

Good idea--I have most of my other records from my doctors--bloodwork, EKG's, ultrasounds when I had DVT, and so on, but no papers from my ophthalmologist--I will request them.

Thanks again--I'll let you know how I make out once I see the new doctor.

Mozelle

[mozelle in reply to mozelle]

The neuro/ophthalmologist received all my tests and records from my ophthalmologist, read them, and made an appointment with me for September 10th. I'll let you know how I make out. By the way, tested yesterday and again, 3.2 INR. This was 2 weeks after the last 3.2. So the doctor and I are pretty pleased.

Mozelle

[Lure2]

Hi Mozelle,

Well done I must say! It could be a little higher INR of course. Please let us hear how it goes!

Kerstin

[mozelle]

Hi Kerstin--Sorry, but this is going to be lengthy-

I went to the neuro-ophthalmologist on Sept. 10th. Good news and a little bad. The problem from my eye is not from APS. He gave me a real thorough exam-my prior ophthalmologists never gave me one like that. He said although my three prior ophthalmologists and 3 optometrists all said that I had the start of a cataract and that may be the problem, that it is not. (If you recall, I stated that I had the problem for about at least 12 to 15 years and I was told just recently that I had the start of a cataract-which is new). He told me that neurologically, there is nothing wrong.

He said that a cataract is usually in front of the lens, (anterior) and I have a 'central posterior polar cataract', which is behind the lens. He said I could have had it for 20 years. That is causing the blurry vision.

I asked why so many doctors before him could not see this, and he stated that they weren't looking for it. I can't believe it---I told him that I gave all of the other doctors the same symptoms that I gave him, and they should have been aware that something different was going on. They just started "fluffing me off" and implying that nothing was wrong with my vision.

He said I had two options--I could have the cataract removed, but it would have to be by someone who has done this type of cataract removal before,--it is more risky than standard cataract removal--per the doctor, there can be complications,--or since I was able to see more clearly when my pupils were dilated, I could put a drop in my eye each day to dilate the pupil and I would see more clearly. It would not harm the eye.

He does not do surgery, just consultations. I am not going to consider surgery at this point.

He is going to send a report and letter to my present ophthalmologist--but I don't think I will go back to him because he should have diagnosed me instead of ignoring the problem.

Anyway, I felt relieved to learn that there was no brain incident that was causing this.

Regards,

Mozelle

[Lure2]

Hi Mozelle,

APS is sludgy blood. Some of us get very tiny embolies (they move around) or clots in the also very tiny bloodvessels in the brain. They can not be seen on MRI. They have effected my eyes, ears and balance. If we can be well anticoagulated at a steady range they disappear. That was what happened to me.

Have you noticed if your eye sight got better when you for a while had a higher INR? As you now are on warfarin I think you shall try and see if the warfarin can help also with your sight. Perhaps not but it is worth a trial. You must be over 3.0 at least.

You have got a diagnose in February now you need an APS-specialist also. Are you testing your INR only every 4 week now? I wish you had a selftesting machine like me. They are very good. Good luck with everything.

Best wishes from Kerstin

[Lure2]

I must add: they are Micro-clots or Micro-embolies. They are not visible on MRI.

Kerstin

[jessie68]

Hi yes I get bright blue coloured orbs,blind spots and double blurred vision !