I was diagnosed 16 years ago with aps. Recently I have had some weird sensations like i can feel the blood moving through my head. At first I thought my inr must be too high but found to be only 2.7 or under 3. I do well when inr is between 3 and 4. 3 years ago i suffered a dvt after being on asprin for 13 years. I then went on warfarin unfortunately a hemaetologist then told me about xarelto this medication resulted in a stroke and sent me back to warfarin. I have been struggling since. Last inr 3.5 but still having weird head feeling.
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Sanpap
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Hi and welcome to this friendly site where we all have Hughes Syndrome/APS.
I know you live in Australia. I assume your Doctor has put you on an INR of 3.0 - 4.0 as you say you feel well at that number.
I hope you have found a Specialist who knows autoimmun illnesses very well. That is exstremely important. Do you still have the Hematologist who put you on Xarelto?
Also how often do you test your INR; at a hospital in a vein or selftesting at home in a finger?
If you only test once a week you do not know so well how the INR behaves. Also if you are triple-positive incl Lupus Anticoagulant (not the illness Lupus but a test they do to diagnose APS), it can be difficult to keep the INR in range all the time?
Many of us here start with Baby-Aspirin and then get worse and need something stronger.
You got Warfarin after your DVT but changed to Xarelto. Then you had your stroke!
Now when on Warfarin again you perhaps need a higher level of the INR and to be tested more often to keep a steady INR at the same level if possible.
Do you also have LMW Heparin to take when the INR drops under an INR of 3.0? Most of us need an INR over at least 3.5.
I have my INR monitored by a pathology lab in Victoria about once a week. This service is excellent. I am texted my INR result and told what dose to take. I have my own machine but it is always wrong. However because of other health concerns I am at risk of sending my INR too high or too low due to constant bladder infections,
I have deliberately avoided finding out too much about aps but it appears to be in the background of other medical conditions that keep getting stranger and stranger and I often have doctors scratching their heads trying to find the underlying causes of the following conditions neurogenic bladder, several bowel operations, glaucoma, thyroid eye disease (only if someone can't come up with another cause for double vision and a thickened eye muscle)..
And to answer your question I do not have an auto-immune doctor but I do have the full suite of others. My newest specialist is my oncologist / hematologist who is replacing two other doctors as one. In 2009 I was diagnosed with breast cancer and it was only speaking to this latest doctor that I became aware of the cancer medication being directly related to causing DVTs it was called Arimidex he also told me that the alternative medication would have been much worse. So I ended up with the DVT however along the way I was unfortunate enough to have my hematologist put me on Xaralto and hence the stroke.
Since then if my INR goes below 3, I have TIAs. However prior to all of this approximately 20+ years ago I lost the ability to use my bladder and have been using catheters ever since. My journey with or because of aps has been all over the place.
Worse still my daughter is now struggling with her own auto-immune disorder probably because of me. She has Lupus, Crones disease and Rheumatoid arthritis and is seeing a auto-immune doctor and is in remission as we speak from Crones disease. has been difficult and complex JOURNEY HAVE Add to dictionary placement that started me on the road to Warfarin and then to Xarelto and back to warfarin.
Was your stroke a result of a clot or a bleed? I take both Xarelto and Aspirin and I have to say I've felt really well on this combo. (Not for everyone and it took a while to get to this point) Unfortunately the Coagucheck is quite expensive in Oz, as are the strips and I don't know of any way to get them 'free' via Medicare.
My stroke was a result of a clot and not a bleed. My hematologist is watching closely some trials going on at the moment and he said that Xarelto may still be an option in the future if the dose was higher. How long have you been on Xarelto and when was the aspirin introduced? When you first went on Xarelto or after a period?
I've been on Xarelto for nearly 2 years now. The Aspirin was introduced about 6 months later when I was getting mild clotting symptoms (TIA's and other transient happenings) I take 20mg of Xarelto and 100mg Aspirin daily and now just check in with Haematologist every 6 months or he's happy to see me sooner if I have any problems.
I am seeing my haematologist next week I will mention what you have said to him. I have only just started to see him and he seems interested in my condition he rang me one night to discuss Xarelto as he has another patient with aps.
The impact of my stroke is only now starting to get better. I lost the ability to write and lost all of my short term memory. I forgot my grandchildren and their birthdays. I wasn't a very good nana. I have people tell me I said or did something and of course I have no idea of what they are talking about. It is like two years of my life was lived without me.
I strongly believe you need an Expert of Hughes Syndrome who knows these special autoimmun illnesses like Sjögrens, Lupus, Hughes Syndrome and Thyroidea and can distinguish between them and also find the proper drugs.
They go hand in hand (like sort of "cousins") and can be easily mixed up even with MS if the Doctor in charge does not understand.
Hughes Syndrome need anticoagulation. We have too thick and sticky blood. I also believe you should either selftest and learn to manage your INR and have enought with test-strips so you can do the tests as often as you need, OR ask for LMW Heparin instead of Warfarin. The oral drugs will probably not be sufficient as you need a higher INR over 3.0.
I can tell you that doublevision is one of the most wellknown neurological symptoms of APS. I had it many many times and a Specialist of eye/ear/balance-issues said it was micro-emboli and I should try Warfarin. I did and all my symptoms disappeared.
I suggest you read "Sticky blood Explained" by Kay Thackray. She has got Hughes Syndrome and writes about the different symptoms of this illness. A book a couple of years old and not with the oral drugs in it, but we still have the same symptoms. A book liked by our members and good for relatives to understand how it is to live with this illness.
Try to find that Special Doctor for you (a Rheumatologist most often but even a Hematologist)!
Hope you try to find a Specialist and the oral anticoagulants are not approved in all countries for arterial clots that need an INR over 3.0.
We know on this site from experience that we all must have a Doctor who is specialized in autoimmun illnesses and who understands APS and can give the right treatment.
Those two things (Specialist + anticoagualtion) are most important.
after my first stroke I was on Warfarin but with the dietary issues I asked for something less restrictive so I was moved to Xarelto BUT as of Oct of 2016 Xarelto had not tested APS when I had my second, and much worse stroke, I only learned this when the hemotoligist that "stopped by my room mentioned it, my response was WHY the #@% didn't they say something! if I had known I would have stayed on Wararin! and probably avoided my second stroke! as far as I know they still have not tested with APS. litigation in US Southern District court still pending, sorry due to this I have a SRONG negative opinion of Xarelto and any thing associated with it, like the celebs promoting it, may be ok for them but I'll stick with Warfarin. imho, ken
if you know of any other people, like me who went to Xarleto, now owned by Bayer, had a stroke suggest they contact Andre Laplace at 225-924-6898 in Baton Rouge LA, ask for Tracie or alaw@andrelaplace.com, sorry for any misspelling,ken
Ken, your experience with Xarelto mirrors mine. My over confident (know all) Haematologist told me before any strokes that he had the perfect solution to my needing fortnightly blood tests (for APS) telling me about the miracle drug Xarelto and he would only need to see me annually to monitor APS . How lucky was he that my stroke removed him from my memory, it was only after researching my lost memories and medical history that I could find the name of the doctor . I still have large gaps in my memory of the last three/four years with my stroke occurring somewhere in the middle, affecting my short term memory both sides of the strokes, let alone the other physical issues. Since returning to Warfarin I have a bigger problem with my INR than before the drug change. Before the change my INR range was between 2-2.5 however when I returned to Warfarin my range needs to much higher 3.5-4 and my blood test are now twice weekly.
My current Haematologist 's recommendation when I first started seeing him was to put me on the same drug; when I said no thanks I do not want another stroke he was shocked and horrorified. The last time I saw him, he said he has reverted his other patients off the drug and back onto warfarin. He has been researching as much as he can what benefits the drug has. He found that the reported benefits of Xarelto on various medical conditions were overrated and he has found cases where it has been used after heart value replacement with some patients experiencing clots after surgery. His other comment was there is no magic drug to counteract the afftects of Xarelto like there is for warfarin.
if you know of any other people, like me who went from Warfarin to Xarleto, now owned by Bayer, had a stroke suggest they contact Andre Laplace at 225-924-6898 in Baton Rouge LA, ask for Tracie or alaw@andrelaplace.com, sorry for any misspelling,ken
This exact thing happened to me. I had a pulmonary embolism in November of 2016 and at the time they didn’t know I had APS. I was originally put on warfarin, then the doctor decided to put me on xarelto when I left the hospital. Well I had an appointment with a hematologist not even a week later and my heart rate was 170 and I had bad shortness of breath. She decided to get a CT scan right then and there and it turned out I had three new clots in my lungs within a week. So bad to warfarin I went. From what I understand warfarin and heparin are really the only medications that work with APS
With your symptoms (neurological and heart/pulm-issues) you should feel best on Warfarin and perhaps also LMWHeparin. It is very important to keep the INR in target and you should see to it that you bloodpressure is quite ok. Cheque with a Specialist who knows.
Yeah at that particular point in time they didn’t know I had APS so they didn’t know that xarelto wouldn’t work on me. I’m on warfarin now (have been for awhile) and I haven’t had any clotting events since (that we know of).
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