Hello, I just discovered this forum which is a relief because I've been having a hard time getting information on peoples experience with APS. I was diagnosed Dec/2016 with APS following a blood clot in my right eye that left me with permanent partial blindness in that eye. Before this happened, I had been getting these "episodes" of vision loss for a year on and off. They were not consistent, not brought on by anything in particular, and would either be full vision loss in that eye or partial lasting anywhere from seconds to over a minute. Doctors first thought they were ocular migraines, but after the clot was discovered, further testing uncovered APS. I have since seen a ophthalmologist and retinal specialist who both concluded that these "episodes" were caused by blot clots in my eye. My hematologist prescribed Rivaroxaban (Xarelto) 10mg in which he said would be the best treatment for my APS. The episodes slowed down but sill happened here and there. When I asked the doctors, they said they didn't know why they were still happening while taking Xarelto and to record when they happen. I was certain that Xarelto wasn't the best choice for my APS. And of course three months later I found myself in the ER after a minor stroke. I had been taking my medication everyday as prescribed, so the doctors were surprised the stroke even happened at all. On top of that, while I was in the hospital recovering the doctors found a 2.5cm(1") clot on my heart valve following an echo-cardiogram. I was rushed to the ICU and given Heparin though IV and scheduled for heart valve surgery in the following few days. Miraculously the Heparin dissolved the clot and through two different echo-cardiograms they confirmed the clot was gone. I was switched to Warfarin 7.5mg and sent home. That was two months ago, and besides getting anxiety here and there, I do feel much better. My INR has been around 2.0 average but i'm still struggling to get it consistently within the 2-3 range they want tor me. In the last two months I've been home, those loss of vision "episodes" have not happened until two days ago. I was out shopping and I loss the vision in my right eye for about a minute. Then another one yesterday for about 10 seconds. My INR is 1.8 so i'm thinking that's why these episodes are happening again. It really bothers me more now then ever when these episodes happen. Has anyone else experienced the type of thing? Thanks
Episodes of vision loss...: Hello, I... - Hughes Syndrome A...
Episodes of vision loss...
Do you have an APS specialist and where are you located? It sounds to me that your warfarin needs to be increased as you are still having symptoms and your INR is too low.
Be patient others will be along shortly🌬
Thanks for the reply. I'm located in Ontario, Canada and I'm seeing a hematologist in Hamilton by the name of Dr. Mark Crowther. From what I've heard he is pretty knowledgeable in APS. I've only been on Warfarin for two months now and from what the thrombosis clinic told me it takes a bit to get your INR within a consistent range. I guess we'll see....
I'm also 34/M
Sorry you having a tough time and its taken so long for a diagnoses.
Really agree with the reply from ApsnoFab, you need your INR much higher, at least between 3-4 and a specialist in APS.
Hopefully someone on here is also from Ontario, Canada that can direct you to the right specialist?
Hello
Welcome to the forum. I get all kinds of awful symptoms and TIAs when my INR is under 3. I have to keep mine about 4 to keep well. The problem is usually finding a dr who understands this as they can be wary of putting your INR target up due to bleeding risks. However we're far more likely to clot than bleed with this condition.
The correct anticoagulation is the key to stopping these episodes. Good luck. X
Hi and welcome,
Yes, I have had those symptoms before i was properly diagnosed.
As others has said you need a Specialist of HS/APS and also a much higher INR. I feel best when I have 4.0. I selftest since 4 years here in Stockholm.
Suggest you try to selftest and read "Sticky Blood Explained" by Kay Thackray. She had also those neurological symptoms and writes about those and other heart-issues like you and I also have. See to it that you do not go around with too high bloodpressure!
Stay with us here and get a Specialist as soon as possible.
Best wishes from Kerstin in Stockholm
Morning hope you start feeling better soon,with a higher INR around 3.5 I felt much better,in the time it took to be able to get to this range I was given cleaxane to give myself, ( anticoagulant like heparin) as well and now if it falls below 3.0 I give it to myself. I self test as well ? A thing for the future
Yeah, I totally agree with previous comments -that your INR is waaaaay too low! And the exact biochemical details are still being hammered out but there is a high statistical correlation between autoimmune diseases, such as APS, and gluten. You might consider going on a gluten free diet to see if that helps. I had vision problems before I was put on anticoagulants – the MRIs show that my clients were not occurring In my eye but in the visual cortex of the brain. After I had been on warfarin for a couple of years a follow-up MRI was done and it showed that the large lesion in my visual cortex had shrunk. My vision is much improved but I'm still a better reader if I use dedicated reading glasses rather than bifocals. Good luck.
Good morning and I agree with everyone writing to you. I too have dealt with your same symptoms as well as both the Canadian and US medical systems, as I spend time in both. I believe that may be part of your problem. I found that it can be difficult to not only find a doctor that truly understands the condition, not just be familiar, but then is also willing to treat you as aggressively as the illness. This can be difficult in a medical system that can turn litigious.
Please start with a very good rheumatologist. I know you will have to take who your primary recommends, but maybe do some homework ahead of time and see which one is treating the doctors wives and families. Even if they are further away. Go for the best, not the most convenient.
I don't mean to sound preachy, I am just concerned for your symptoms.
Good luck and please let us know how you are doing!
Thank you everyone for the replies. I am going to call my hematologist this morning and ask if my INR range be between 3-4. I feel much better knowing there are others out there that have experienced the ups and downs of APS. I'll keep everyone posted! Thank you!
Just an update, I emailed my hematologist this morning asking for his thoughts on raising my INR to above 3. This was his reply...
[[ There is no evidence that higher intensity warfarin is more effective than 2.0 to 3.0 - in fact, in the two studies that were done patients allocated to an INR > 3.0 had more clotting events than 2.0 to 3.0. Increase your dose a little to try to get to 2.5 to 3, but I would recommend against aiming for a target > 3 ]]
So I guess I'll have to see how things improve when i'm closer to 3. Right now I'm at around 2.
What can I say ......... leave that Doctor as fast as you ever can!!!! Thank you for letting us know his answer.
Kerstin in Stockholm
I agree with Kirsten - you need to see an APS specialist asap.
Jaymacz: I was told that also. Keep pushing the doctor and sooner rather than later.
Check out "proof Hughes question of the month for Nov 2016" in the upper right hand corner of the page, it actually has a video of Dr Hughes himself explaining this. Hopefully you can plead your case with this.
Also let them know if you suffer a stroke because they will not increase your INR you will hold them responsible... try to be more diplomatic when you explain this to them as you catch more flies with honey than you do vinegar.
Good luck, keep us posted. It will probably be a struggle to get what you need from them because they are afraid of higher INRS. They must be reminded we don't bleed we clot. We would probably clot to death before we bleed to death.
Believe me, we all share this struggle to get the proper care!
How do you have more clotting events with a higher Inr? very weird. I have a target range of 4 - 4.5 because I had a third stroke with an Inr of 4. I take both Warfarin and aspirin as a result as Warfarin alone didn't prevent the stroke. Professor Hughes recommends a higher Inr as does my specialist Professor Hunt.
Most Doctors just don't understand this condition and are worried about bleeds when they really ought to worry about clots.
I forced my Heamotologists hand by increasing my Inr and feeling so much better, so he agreed to raise it. Then after my last stroke he couldn't raise it fast enough. These days I stick with the specialist and both self test and self manage.
Your doctor's feedback was very odd. It would be interesting to know what was the source of his research. It just doesn't make any sense. Anybody on warfarin would say the same...INR too low you clot...too high you bleed. How this works out is related to your underlying condition and we are all individuals. I had visual problems before going on warfarin with a target INR 3-4.
Occasionally if for some reason it creeps up to 5, I can soon pick it up through self testing or I will know anyway as my gums might bleed too much when cleaning my teeth. If it drops to around 2 my headaches and general feelings of being unwell start. Around 4 is the optimum for me. You do need a doctor who can work with you to get to the optimum level of anticoagulation for you. It doesn't sound like you are quite there yet but hopefully with the right support you will get there soon.
I've been actually able to find the article outlining the study my hematologist was referring to....
[[The Warfarin in the AntiPhospholipid Syndrome (WAPS) study by Finazzi, et al. was the second randomized clinical trial to determine whether intensive anticoagulation was superior to the standard anticoagulation therapy in preventing thrombosis without increasing risk of bleeding in patients with antiphospholipid syndrome [9]. The single-blind study used 109 patients randomly assigned to either high (INR 3.1 - 4.0) or moderate/standard (INR 2.0 - 3.0) anticoagulation therapy [9]. The mean INRs for each group were within their targeted ranges and differed statistically. While the hypothesis of the trial was to demonstrate superior prevention in the high-intensity group based on previous retrospective studies, their results demonstrated more recurrent thrombosis in the high group compared to the low group, (11.1% vs 5.5%, respectively, hazard ratio 1.97, 95% CI, 0.49 - 7.89). Additionally, 15 patients (27.8%) in the high-intensity group compared to eight patients (14.6%) in the moderate-intensity group experienced major or minor bleeding, with statistical significance found when compared minor hemorrhage rates of high to moderate (27.8% in high vs 10.9% in moderate, HR 2.92, 95% CI, 1.13 - 7.52, p = 0.027) [9]. Their findings suggest that high-intensity warfarin treatment is not superior to moderate treatment in the prevention of recurrent thrombotic events and has an increased risk of bleeding when compared to moderate anticoagulation therapy.]]
Link here - ncbi.nlm.nih.gov/pmc/articl...
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