Hi from Norway 😀. This is my first post here. I got APS and PE in both lungs this summer and have been using Xarelto since that happened. The last Month thow, I have felt light headache and dizzines, every day, and this weekend I had a short TIA. The doctor want me to change to wafarin instead. I am worried because of the risk of utstabile INR, and will this help with the headaches or is it the APS ?

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  • Hi there from the UK. I am too a new person on here, and have been reading all posts without actually writing one! I am in the middle of being officially diagnosed with APS. I have had 2 positive blood tests for the anti-cardiolipin, but do not have lupus. I suffered a stroke last August whilst in Portugal on holiday - I am 43 years old, fit and healthy. After brain MRIs, it seems I had suffered 2 strokes, one being at an earlier date which they haven't been to able to specify. After testing for the anti-cardiolipin antibodies, they added Xarelto 20mg to my daily drugs (I also take bisoprolol and atorvastatin). I suffer a lot from daily headaches and dizziness (exacerbated by wine!!) and wonder if this a symptom of either APS generally or the Xarelto. I have been using Xarelto for almost 2 months and not suffered any other side effect I am aware of. I worry that I am having TIA's when I get very dizzy but it seems to pass and some days are better than others. Tiredness makes everything a lot worse I find

  • Interesting, same experience with Xarelto , and very easy to use, but for the last month I started to experience headache and dizziness. Worrying was the TIA last weekend, that should not happen with Xarelto ...?

  • How did you know it was a TIA and not a dizzy day??

  • The reason was I got dubble vision for 5-6 minutes. Later on, no more dubble vision. Just once.

  • Yikes. The only thing I worry about with Carleton is we don't know if our inr is right but my docs say that further strokes should not be that possible on anti coagulation even noacs

  • My docs have disagreed about stroke risk, and quite spectacularly. I had TIA a year ago, plus evidence of other older damage on MRI which they are a bit vague about. I honestly don't think they really know for APS - too little data to go on.

    First consultant neurologist told me "don't worry you are definitely not having more strokes" when I reported vague neuro symptoms - brain foggy, occasional coordination problems. He had me on clopidogrel (plavix).

    Second consultant neurologist said (well, more shouted, whilst banging the desk) "this clopidogrel is just aspirin, it is useless for aps, you are at very high risk of stroke, any symptoms you must go to hospital immediately". Good job I wasn't having symptoms by then...

    As it happens, the first guy was right, in a sense - changed one of the blood pressure meds and the symptoms went away. He also said I didn't want to be on warfarin - but everyone else has disagreed (2nd neurologist, haematologist, Rhuematologists (x4 or 5), nephrologist). Turns out he was right there too - I agreed to go on warfarin (not given any other option) 2 months ago, and it's been a nightmare (including bringing on neuro symptoms). Never felt this bad for this long in my life, including the stroke (TIA) - and can't even take solace in the wine cellar because drinking is prohibited on warfarin (in any effective quantity).

    But warfarin works for some people.

  • That is sad to hear. Seems quite a job, to bring Wafarin working well..? I hope you will find a solution. Starting with Wafarin myself this Saturday ..., from Xarelto

  • Hello and welcome, it is vital that your specialists stabilises your condition with the correct drug for you. Did they give you the reason for changing you to Warfarin? Presumably your current symptoms. I notice some work going on in this hospital with regard to Hughes Syndrome/APS. lup.sagepub.com/content/ear...


  • Thanks , yes the reason, they want to change is the current symptoms. I just hope this change will help with my symptoms, I am confused if to expect this symptoms anyhow with APS. Because I would prefer the easy Xarelto, but if that's the reason for headache of course I will stop... Do still wait to get contact with a good specialist locally... Are also waiting to get confirmed the second test for Primary APS, but if anyone knows a good specialist in Norway regarding this I would be happy to know. Thanks for the tip above, but it is In Tromso some 2000 kilometers north.

  • Hello again. Do you by any chance know of a APS / Hughes specialist in Oslo, Norway ?

  • Hi we only hold a list for the UK, however I do try to help through medical papers written on line, here is one, you could track down the names at the hospital in Oslo: cdn.intechopen.com/pdfs-wm/... Best of luck. MaryF

  • Thx ☺️

  • I wrote LE which is a short form in Nowegian for pulmonary embolism (PE) as is a blood clot that occurs in the lungs. I had Big clots on sides.

  • Have you been on Warfarin in the past or straight onto Xarelto? I've been taking it for a while now but because of an earlier small clot I have 100mg Aspirin added as well. (this is on haematologist's advice-not saying you should add it to your mix!) It's keeping me (almost) normal but if I'm tired my brain gets a bit foggy. Otherwise I feel pretty good. There are many on here who've been on Warfarin long term and if it suits it's a cheap fix.

  • I have been on Xarelto 5 months, until January no problems. I have never used Wafarin before. But the neurologist meant the dizziness and headache, may be a side effect from Xarelto.. I don't know. Will start with Wafarin Saturday , hopefully it helps..

  • I have been on warfarin since 2001. The headaches went away, the migraines went away, the panic attacks – which I now know were TIAs and mini strokes – went away. The annoyance of learning which foods interact with warfarin, and taking care to eat the same amount of vitamin K every day is, indeed, annoying. But warfarin works for me. ( and from the site I know that we're all different, and the perfect anticoagulant for one is not perfect for someone else.). I routinely cheat and drink a bit of wine, or gluten-free beer, or hard cider each night with dinner. So far, my INR has remained stable. ( over the past 15 years I have been above my range only once and below range only 4-5 times.) For me the trick to mastering the dietary restrictions of warfarin is to become very familiar with the vitamin K foods as well as the natural blood thinning foods such as ginger, alcohol, cranberries. and then try to balance one with the other and remain consistent on a day-to-day basis.

    Diagnosis and treatment with warfarin saved my life. Discovering I had a gluten allergy into 2004 and beginning a gluten-free diet really improved my life. At age 60 I have more energy than I had at age 20.

    Good luck!

  • So basically you need to drink wine everyday! I might switch!! :-)

  • My current local hematologist is not happy that I drink wine, beer or cider every day – to say the least. But my experience is: consistency is the key.

  • In the paper I got , it says, it is ok to drink 1-2 glasses wine, some day's a week, is that a problem usually ?

  • I have heard conflicting advice from hematologists I have consulted with. My current one wishes I would avoid ALL blood thinning foods, such as ginger and wine, as well as All high Vitamin K foods, such as kale and spinach. But the hematologist who diagnosed me said that (and this was back in 2001) recent research indicated that those patients who ate a variety of foods, but tried to mentally balance thinning with thickening foods (the current hematologist calls this "voo doo blood chemistry,") and strive for a sort-of consistency, were, oddly more likely to have stable INRs.

    ????? I know what works for me, but I'm certainly no hematologist.

  • There seems to be much conflicting advice around - which I find a bit worrying when its a drug that has been around for so long.

    I have been told by both Rheumatologists and heamatologist that the only problem with alcohol is varying your consumption, you must drink the same every day. Then the warfarin clinic say no I have to follow govt. guidelines and have alcohol free days every week, and when I pointed out this contradicted other medical advice they just became more insistent on "follow the guidelines".

    And no one seems to be able to give a straight answer on cranberries:

    "ok no cranberry juice, but can have cranberry sauce (xmas dinner) ?"

    "no it's all cranberry products not just juice"

    "so what is the safe amount?"

    "we don't know, so assume no amount is safe"

    "so if I accidently have some do I need to go to hospital or what [they are in quite a lot of things - I am now having to avoid anything that's "red berry", cranberries are not even highlighted as in ingredient lists, presumably as they are not an allergen and only dangerous for people like us]"

    "no you'll probably be fine if its just a small amount"

    "ok, so what bit of cranberries causes the problem, do we know if it's in any other fruit, what if i want to try new exotic fruits?"

    "no one knows"

    And yet, we've been using warfarin for 50 years so we know everything about it....

  • Part of the confusion I'm sure comes from the emotional responce to " killer Coumadin" Whena doc or nurse witnesses a bleed from a high INR patient they never forget and want to make sure that such bleeds never occur iin their watch.

  • Thanks a lot, this is good to hear. This helps me a lot, am a bit worried about having to much side effects with the APS and the Wafarin . I think me and my wife have a quite regularly eating pattern, hope we will be able to continue with that, and not be to concerned at everyday what to eat. I suppose eating a balanced diet is the clue..?

  • I would want to be clear about the exact reasons why the doctors want you to change, and also to agree what the change is supposed to improve and what the procedure is to switch back if things worsen.

    Headaches and dizziness are known reported side effects of Xarelto, as are vision problems (in one of your comments). They are also reported with Warfarin (and I can confirm - I've had constant headache for 2 months, 1-2wks after starting warfarin). Or they could be APS symptoms.

    The TIA is probably more important, if you are having clots in brain then Xarelto isn't working for you, so probably better to try Warfarin, and maybe higher INR (Xarelto is equivalent to 2-3 apparently). But, I personally would want confirmation (MRI or CT or whatever) that it was definitely a TIA and not just TIA-like side-effects (or even a bleed), it isn't clear if you've had scans done or not.

    If it is just about side-effects then warfarin is supposed to be lower in non-bleeding side-effect (but higher bleeding risk in some studies). It is certainly more hassle, but only you can determine if (_possibly_) getting rid of your headaches & dizziness is worth the regular blood tests and having to balance diet vit k, not drinking alcohol etc.

    The only way to know if warfarin is better _for_ _you_ is to try it. I guess it is possible that you may have similar reaction to any anticoagulant, maybe give warfarin a try (few months) but arrange a timescale to switch back if there is no improvement.

  • Thanks, good advice ! The reason for me to change is they suspect the side effects coming from Xarelto. And they think I had a TIA because of the dubble vision occurred. They did not see any clots at CT or ultra sound. They did not use the MR , wanted to try the Wafarin instead., and if I still having headache take the MR....As you say, trying warfarin will hopefully clarify that. From my short reading at the forum, it seems to be many patients having APS need an INR range of between 3.0-4.5 is sometimes necessary for patients who are prone to clotting. ( I had PE in August and two big clots , one in each lung..., not good...) If the Xarelto only gives a INR equal to 2-3 that is maybe to little to avoid side effect of the APS ?

  • Could be, but could also be drug side effects. To me, if your APS caused the clots (which is almost certain) then you had APS before, so you would have had the other symptoms before. Otherwise your APS has got worse, when treated, which also seems wrong.

  • Yes, agree about APS causing the clots, but the symtoms are new for me. I have never experinced headache before....

  • I was very nervous when I was first prescribed warfarin. One doctor told me the following: warfarin is a natural substance from the curarie plant found in the Amazon. Warfarin has been in use for decades. We know all of the side effects and the side effects are only the natural consequences of thinning the blood. Warfarin inhibits the uptake of vitamin K. And that's all it does. After all this time it's been use, there are no associations with an increased cancer risk or anything else. It inhibits the uptake of vitamin K and that's it. "

    So in that regard, warfarin might prove to be safer then the newer drugs. Only time will tell.

  • That is very good to hear ! The list of side effects for Xarelto is long....

  • At some point in their medical training, nearly all doctors have been confronted with the patient whose INR became dangerously thin while on warfarin. So it has the nickname of "killer Coumadin." But when doctors recall those scary memories when treating APS patients they are comparing apples to oranges. Most patients take warfarin because they have a sticky spot in their circulatory system – such as a valve replacement or a fib. We take warfarin because we have a sticky circulatory system. Not a sticky spot --rather, all of our blood is sticky. I would love to see the numbers comparing percentage of bleeding events in APS patients compared to non-APS patients. I do not know if such a study has been run, but it would be interesting to see those results.

  • we might see something on this when the rivaroxaban studies are released, because adverse events would typically be logged and compared with what they already know on warfarin - i.e. they are looking at efficacy and safety.

    I'd like to think we are lower risk, but I wonder, since APS patients are also known for having more variable INR (thankfully mine is fairly stable), which is a big additional risk factor for bleeding (at least in the non-APS patients).

  • That would make interesting reading for us Hughies.

  • I agree with Gina that Warfarin is the perfect anticoaglation for APS if it suits you, especially when you also have Lupus Anticogulant. The best method is to selftest. I have done that for 3 years.

    I have been drinking 1 glass of redwine for dinner for several years. Actually on Rheumatologists suggestion in 2003 before I had started Warfarin and was only on Baby-Aspirin. Important not to drink more and to do it every day as constancy is important with everything you put in your mouth. I started Warfarin 4 years ago.

    Kerstin in Stockholm

  • Hi I'm from Denmark and had PE in both my lungs a year and a half ago with infection in my right side. I was on marevan for 6 month then taken of cos they needed to test my blood. Only because of this site im in treatment again... The hospital forgot me. I take xeralto and have done for about 2 months now. I don't have dizzy spells or headache. I get migraine headaches when I have to have my period and have heavy bleeding. They are still very unsure about xeralto, but my new specialist said they would let me keep this cos my fatigue and pain in my body is gone. I'm alone with my daughter and also have a company to take care of. I hope marevan will give you your body back so you can enjoy life again... Good luck xx

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