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Sticky Blood-Hughes Syndrome Support
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Coumadin (and Xarleto) and Memory Loss

Hi All,

I was wondering if anyone else has experienced memory loss while being on blood thinners. I started taking Coumadin when I started graduate school in 2009 (at the age of 27) and over the years, even when I transitioned to Xarelto in 2011-12ish til now, I have experience short-term memory loss. My hematologist hasn't really taken me seriously when I mention this at EVERY appointment... though memory loss is a stated side effect of APS. Having been on blood thinners from 27 years old through now (36), I know that my memory has been significantly impacted.

Has anyone else experienced this? Are there any studies out there??? The only thing I can find is with patients that are 50+ years old.

Many thanks

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I myself have memory loss, short & long. I have only been on thinners for one year and I notice this issue.

I watched a video of myself participating in something and had no memory at all of it! Cannot remember some simple things from yesterday, but then there are times I remember some things like they just happened. Strangely I have a hard time convincing people I do remember without someone else verifying what I am saying!!!

What a mess. I have mentioned to my doctor and he notes it. I will mention that again at my next appt in June.

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Hello there,

I see you have recently joined.

Do you have APS?

Warfarin should improve your memory if the problem is “sticky blood.”

I think a bit more info on your personal bio might be helpful.

I would address any concerns with you doctor of course, especially your Hematologist and neurologist.

Here is an overview of APS/ Hughes Syndrome:

ghic.world/

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Hi Kelly... yes I have APS and familiar with it. Unfortunately, in my case, I’ve been dealing with memory issues since being on blood thinners. Note that I have addressed it with my doctors and they ignore it even though memory issues are a side effect of using Coumadin.

I’ll be happy to update my profile with all of the information that I have listed above.

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Thank you for your reply.

I do not see mention of a neurologist. It is important that a neurologist weigh in on this.

Your neurologist and Hematologist should both be familiar with APS.

As we are not medical doctors we cannot advise, but can only give you the benefit of what we have experienced. This I will be happy to share with you . Please realize it’s patient to patient dependent, depending on your particular clotting history. This is what I mean by your,” bio.”

In which state do you live?

My Hematologist and neurologist both advise in my particular case the addition of a very minimal amount of anti platelet. This must be extremely carefully monitored. You may find it greatly increased your bleed risk. You may find it greatly improves your memory. You may find no benefit at all.

Right now I’m not home- I don’t have access to papers on this- but I would also check for temporal lobe seizures.

Can cause amnesia blips. Poor memory.

I had no idea I was having seizures.

It’s just a thought. About 7- 10 fold more prevalent in APS population of epileptics than non epileptic patients. ( if I’m remembering correctly.)

I’m doing fantastic on topomax.

Your memory issues may not be related to warfarin. ( correlation not causation.)

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I have never heard that Memory-issues should be a side effect of using Warfarin! Interesting!

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Hi again,

Memory issues is a symptom of APS. Memory-issues is one of the most usual neurological symptoms of APS (said by prof Hughes). That is why I asked about your therapeutic level they have decided as you are now starting on Warfarin. We have too sticky and thick blood that has to be thinned.

Sometimes bad memory can have to do with other things but I hope they will let you have a rather high INR (and also stable) as neurological symptoms usually need an INR between 3. 5 - 4.0.

My memory is rather good (I am 75 in June) much better with Warfarin but before I was properly anticoagulated with Warfarin, my neurological symptoms were really bad.

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I'll be seeing a new hematologist specializing in APS later in May, so I will chat with him on the ranges. I will say that the new studies that have come out about Xarelto not thinning blood enough, has me thinking that 6-7 years of that may have effected memory. When I was in the hospital in March and April (for PE).. my INRs were 1.2-1.4... that was with me taking Xarelto consistently. So perhaps I was juset VERY lucky over the past 6-7 years.

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I think you are quite right there.

Very good to have found a Specialist Hematologist (!) in May!

Good Luck in May and please let us hear how it goes for you.

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Your INR is only measured when on warfarin. Anybody not on warfarin will give those results.

Xarelto does not effect the INR readings either.

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Hi, just a quick question, is your heamatologist a specialist of Hughes/APS?

I'm concerned that you were on Xarelto way before it was even an option for us and that your doctor is not listening to your concerns?

I can't say memory loss re warfarin, as I'm on clexane but I was on Xeralto on a trial for a year and did notice some brain fog.

A bigger reason for me re memory loss is low ferritin or iron defiency? Have you been tested recently?

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My hematologist isn't an APS specialist... after this episode with the PE, I'll be seeing the docs at the Lombardi Center here in DC. And yes... agreed that it was/is concerning that I was put on Xarelto when there hadn't been enough studies done... (not sure who you are refering to in re: "option for us".

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'Option for us' relates to all Hughes/APS sufferers.

Yes good idea in getting to see an APS specialist.

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Hi Holly -- question for you... Do you have links to scholarly papers that discuss the various INR ranges? I've only been able to find suggestions of 2.0-3.0 or 2.5-3.5 with no supporting research link. Also... as I'm getting my blood levels stabilized (just 2 weeks into this) - my levels were 4.2 and the nurses freaked out and the doc did too... wanting to give a vit K shot. It seemed a bit ridiculous. So I'd be really interested in any scholarly information (as I'm also combing Google Scholar), that I could also provide him. Hopefully, my appointment with the specialist at the end of May will provide more info.

I have a theory... I've been telling my doc for years about the memory thing (while being on Xarelto) and he just shirked it off. But in reading more... I'm beginning to think that the memory issue was because Xarelto didn't get my blood thin enough (which is what the latest studies have also concluded) and therefore... I suffer/ed memory issues because my blood was still thick (and I just got very lucky with having no event until the recent PE).

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I thought you were on Warfarin and had switched to Xarelto after your PE.

Where have you found that we get memory issues when we take Warfarin as a side effekt?

We still get memory-issues if we are not correct and stable anticoagulated at an INR high enough for our symtoms to go away. Remember it is the vein-value you can count on. If you selftest, the fingerprick-value usually is higher, if you test the two bloodtests at the same time or within a couple of hours.

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I wonder if I understood you correct that you had changed your Xarelto to Warfarin after your PE. Warfarin is working better with APS probably as already known.

But side effects like bad memory from Warfarin!!!? Who told you that?

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Its complicated. With APS patients memory loss is usually related to having blood that is not thinned enough. As I have mentioned before on this site, comparing APS patients on warfarin with other patients on warfarin is like comparing apples to oranges. They are treating a sticky spot/s in their circulatory system by making their normal blood thinner. We take warfarin to make our sticky blood more like normal.

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I get cognitive problems including with my memory, concentration and comprehension coordination and recently for doing calculations. This is despite being on warfarin and clopidogrel for years and I’m not allowed any more anticoagulation, in fact most doctors are horrified by the amount I’m on already. I pass a GP dementia test getting 9 out of 10. The memory problems go right back to my diagnosis in 2001 when Prof Khamashta asked me about it as one of the things he looked for in diagnosing APS. I think I’ve mentioned them in every consultation I’ve had since then as they are getting progressively worse.

I’ve been trying to get some neuropsychological testing done but because I’m a complex case no one seems interested. It’s actually causing me difficulties in getting full benefits as they refuse to accept my cognitive problems as being enough to cause me difficulties on a day to day basis because I could answer their 5 question test that was very like the GPs dementia test. That’s why I asked for the neuro testing. I have an excellent consultant in Brighton and he looked very abashed when he admitted he couldn’t find anyone to do the testing.

But the cognitive issues are a well known symptom of APS and lupus and there is research being done I think. So I don’t think that they are something that goes away with full anticoagulation.

Judi

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Are you on Warfarin? On what INR? We can only know what we have experienced ourselves and read about (Sticky Blood Explained + Prof Hughes 4 books and being on this site for many years).

Memory is a tricky thing! When Ihad too low INR I did not know if my parents were dead or alive and not what occupation my two daughters had. That senario did not happen often I can assure you. But frightening! During those years with low INR I remember very little today. I STILL (now with high INR) do not remember what i did those years in full. Still gone for ever.

When my blood is well thinned (an INR of 4.0) I can manage my daily rutines, do things but i am very eager to write everything down in case I should forget and mix everything up. Mind you I am 75 in June.

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Yes, as I said I am on warfarin and clopidogrel. Warfarin target is 3.5. So no more anticoagulation for me, my haematologist wants to reduce my warfarin because of my age as our blood vessels weaken but luckily my rheumatologist says to leave it as it is. I am 66 so that is probably part of my worsening memory but warfarin didn’t help it even 15 years ago.

I’ve also read a lot and admin one of the Facebook groups, but I looked into it online when having trouble with the benefits people too. I’m hoping also that I’m about to get a diagnosis of sleep apnoea and that the treatment will help with my cognitive issues. I didn’t realise until I was just tested that sleep apnoea and APS have a lot of the same symptoms. It makes sense when you think of sleep apnoea interrupting the flow of blood to the brain. It will be interesting!

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Hi Jumper,

I read that earlier you were not satisfied with your readings with the Roche-machine. Your Doctor was terrified when you had an INR of 3.5 (?) I wonder if that Doctor was up to date with our sticky-blood-syndrome. We do not bleed but clot from this disease! Also many of us have micro-clots or micro-embolies and they can be very difficult to find on an MR.

You said you had a difference of sometimes 0.4 and also 0.8 in INR. I

do not know if you are Lupus Anticoagulant positive and with a high therapeutic level Roche say they can not garantee a correct number when testing in the finger. They do not want us to use Coaguchek as I can understand when on high INR.

You said yourself that you had a difference beetween the vein- and the fingerprick value (0.4 or 0.8) like most of us with APS. Usually the fingerprick value is higher than the vein-value.

After the "new" teststrips we now use, that have a LOT-number over 334499 (trouble before november 2018 with those under that number) the INR is rather reliable like before.

There is always a difference for me (around 0.8 in INR) but I test rather often and do pararallel-tests more frequently these days at a lab (both bloods taken within 4 hours time; vein - fingerprick).

If the difference between the two bloodtests is the SAME or almost the same every time, it is ok to selftest (then you know your vein-number that counts) and I dose and monitor my INR myself. I need 4.0 in INR.

I live in Sweden and have really good support from my hospital and my Hematologist who knows me since 15 years.

I am quite sure that it is not good to go around with a too low INR and having neurolgical symptoms. That way we get more symptoms especially those symptoms which need a high INR and those of us who have several antibodies and a great risque of thromboses .

We are all unique with different "types" of APS, I know that now, but we can read about the most usual "neurolgical symptoms", and they are dizziness, bad vertigo, loose vision on one eye for some time, bad word-finding, bad memory , falling suddenly etc etc. It is so sad that so many here have never been allowed to be able to have a proper and stable INR and that is why we need a Specialist who will let us (dare) to be properly and stable anticoagulated.

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I’ve been home testing for about 15 years and only ever had a problem when Roche had a problem with their strips. I was very stable for most of the time. I’ve been using the new strips since they first came out (I get them direct from Roche and was one of the first to get them) and the anticoagulation clinic and I checked and rechecked and triple checked the machine against the venous samples and it’s back to being acceptable now, 0.3 above venous. We do the two blood tests within an hour of each other so even more careful than you. My anticoagulation clinic would not accept you as a home testing patient if you are 0.8 difference, they will only accept up to 0.5.

There are it seems many doctors who think I’m taking too much anticoagulation, some who know a lot about APS even. It’s not the level of warfarin but the fact that I’m on clopidogrel as well which upsets them. One particular doctor is extremely knowledgeable about APS and does private work out of London Bridge, alongside Prof Hughes when he worked. He would literally flinch every time he read my list of medications! It’s only because Prof Hughes himself set my medication and because I still have the odd TIA that I have been allowed to stay on it. But luckily as I said, my current rheumatologist says that I should be on both even at my advanced age!!

But it still has no apparent effect on my neurological issues, not all of us get rid of those on anticoagulation. I know others who are the same. APS is still not well enough understood to explain it all. I still get migraine too even with the anticoagulation again as others do too. Anticoagulation does not provide a total answer to all of our symptoms although it is life-saving by stopping many of us from clotting so easily.

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I know that special types of migraines are not helped by Warfarin. Some need quite other drugs. I take a low Heparinshot when my INR is under an INR of 3.5 not to clot.

Aspirin and Clopidogrel are as you know Antiplatelets and not Anticoagulation-drugs and Clopidogrel work in a different way to Warfarin to make the platelets slippery.

I do not know the reason you have got Clopidogrel and if you are positive to Lupus Anticoagulant but I have learnt that Clopidogrel can be given if you need it as to certain symptoms. Perhaps because of your "odd" TIAs you mention, but you have not told us what "odd" is about.

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‘Odd’ just means infrequent or irregularly in English.

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( in British English. In American English we would use the word infrequent exclusively.

“ odd” would be used to mean out of the usual character or totally unexpected or unexplained...

We Americans have ruined a perfectly good language! 😂

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By the way... a ,” funny turn” about did my brain in trying to come up with an equivalent American translation....

We call it a ,” spell” in the American south. In the Deep South you might have, “ had yourself a little spell.” 😉

Elsewhere in the real world, I think you would tell your doctor you ,” just had this really odd sensation where_________” and then you would just describe what happened.

So funny! But not a funny turn let’s hope!

Must be an idiom derived from ,” a funny turn of events.”

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MW with APS,

Good morning from here in the USA.

You are looking for a “fixed” number for your INR.

You will not find it, “ exactly.” You will find a suggested range.

Your personal range will depend upon your personal clotting history to set your initial target INR range.

Your APS Specialist In May May adjust that with you as time unfolds a little.

APS patients should have an INR of around 3.5-4.0. Your doctor should keep it in that range.

Most patients find if they jump too high only lowering the dose a tiny bit and reducing greens in diet will bring down the INR nicely.

Did I read correctly that you have only begun warfarin two weeks ago?

Keep greens ( vitamin k value) very very steady.

A good resource is:

warfarin.org

Spinach has a very high value, I use it when I need a big impact. Broccoli is a daily staple for me. You will find in general it takes about 12- 15 hours to see the impact of either an increase or reduction of vitamin k on the INR. Warfarin on the other hand , as you know, is 48-72. Try to think of greens as an ,” adjuster” to your baseline INR. Adjust for the upcoming hours and lag hours of both incoming warfarin from two to three days ago and greens.

Keep a chart with columns. Dose, LMWH, Symptoms, notes,

It’s important to be drawn often while you are learning your body and warfarin. More importantly, you need results quickly. My GP wrote a letter allowing me to have the local hospital where I’m drawn call me with my results when they get them in. I have a standing order at that hospital.

Are you triple positive? ( how many of the antibodies are you positive to? The LA one specifically? ) it can make us very unstable in general on warfarin.

I’m not sure if I have specific papers on range...

My Hematologist in San Antonio said to run it at 3.0 when I was first diagnosed ( in hospital with a DVT) . I knew NOTHING about APS. He was not a specialist. I had trouble getting there or staying there. He wanted to get help - he had not had an APS patient before. My GP ( London trained) and neurologist ( London trained) suggested the London Lupus Centre/ Graham Hughes.

I have had Hematologist in the states and London just automatically know that it needs to be at 4.0 but I’ve had multiple DVT’s plus brain arterial involvement. ( seizures, and optic nerve atrophy- tiny clots )

This is where your personal history will drive your target INR.

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Hi, it is important to work with your main Hughes Syndrome/APS specialist to get to the bottom of this, as many things can cause brain fog, not just Hughes Syndrome/APS and Lupus, or your particular medication, some have their INR set to low which can make this worse, but also important to examine levels of Thyroid hormone, also D, B12, Folate and Ferritin, mine were all low years back, plus eating gluten alongside allergies to it with extreme sneezing, I also had worse brain fog. MaryF

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YES!!!! I totally got memory issues when starting blood thinners. I already had memory issues, which I was hoping the blood thinners would help with. I also put out something to ask folks if they'd had a similar experience and everyone said no! BUT, I'm telling you, it's real!!!!!

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I have been on Coumadin for 15 years and have experienced a lot of memory loss. I have also mentioned it to my doctors and they also brush it off. I have also gone into stage 4 kidney failure and had biopsies done last summer which said the damage was caused by long term Coumadin use.

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I don't believe that the memory issues are because of Coumadin. This is more likely to be the result of sludging as thick blood tries to move thru the tiny capillaries in the brain, resulting in diminished capacity. This is also a potential cause of the head pain we often experience. Not to say that many of the common meds we take for APS don't have memory problems associated with them. But cognitive dysfunction and both short and long term memory issues is incredibly common with APS. Keeping your INR at a therapeutic level is critical. I find that I become more symptomatic when my INR is low. Dr. Hughs has a chart of how each of our organs are affect by APS. In his section on the brain, he explains this. Find his blog, print it out and take it to your doctor.

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It is my belief that you are spot on. As a few others on here have mentioned on here, me included, an anti platelet might need to be added - with caution. My neurologist has said there is a slightly less bleed risk with clopidogrel over aspirin. It does take about 5 days to get to level.

It can be halved , quarterd. I did not feel comfortable taking the entirety of even the lowest dose.

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