Dementia and hughes syndrome

I have Hughes syndrome and raynards and high cholesterol high blood pressure fybromyalgia severe depression and been having test for dementia I was told last week my dementia is down to Hughes syndrome I've also had tia last year I'm struggling with pain and walking and my breathing is getting worse I'm on clopidogral and abaxiban can any one give me any information about the dementia and hughes thanks

19 Replies

  • Hi, I have aps but no dementia - my mother had dementia so a couple of years ago got very worried I would go the same way especially as my memory started to go! (Im only in my eary 50's) - then I got diagnosed with B12 ddefiency (Which I understand can go with Aps) since treatment a good % of my memory came back with no relapses since. Not sure if this will help you but certainly worth trying to get tested?

  • I forgot to mention I have b12 injections every 12 weeks and multI vitamin daily I'm 45 years old

  • B12 every 3 months is probably not enough. I have one every 2/4 weeks!

  • Hi Kelly71,

    I am 72 and on Warfarin for my APS. Are you 71?

    First I wonder if you have got someone who understands what APS stands for? We have too thick blood that cause our symptoms and APS.

    I had also exstremely high bloodpressure before my blood was properly thinned with Warfarin 5 years ago and also neurological issues with sometimes up to 30 minutes when I did not remember if my parents were dead. They had died in 2000 and in 2009 and also I did not remember another time what occupation my children had (also a period of over 30 minutes). My children are around 40. So I was frightened! This was before the anticoagulation with Warfarin.

    Where do you live and who diagnosed you with APS? You should absolutely have a Specialist of autoimmun illnesses like APS, SLE, Sjögrens. He also knows about Fibromyalgia I am sure.

    Who is treating your high bloodpressure? I feel fine today and can exercise every day like going for a walk over half an hour. The lung-and heart-Specialist has told me to tell when i get breathless. I have not been breathless yet. I do an Echocardiography with doppler every year to see that my leaking heartvalves behaves as well as my Pulmonary Hypertension.

    Warfarin was my lifesaver. Apixaban is perhaps not the right anticoagulant for you.

    Best wishes from Kerstin in Stockholm


  • This trouble with memory has nothing to do with age. It has to do with APS and anticoagulation.

    I see that you are no71 but born that year I assume


  • Yes I'm 45 I'm from the UK I just seem to be going to one Doctor to another so I thought I do some research as I was giving the meds and that's it

  • Hi, it is vital that you also check your levels of vitamin D, B12 and iron, low B12 can cause dementia like symptoms, low vitamin D adds to this, and I must stress here so does low thyroid function, if you have been told you have Fibro and the only testing done is the faulty and unreliable TSH test, then I do urge you to privately test your symptoms via Thyroid UK. I do many tests and it showed up with bells on! I also enclose symptoms. I ended up struggling to climb the stairs and becoming more and more immobile with my brain fog so bad I could not function. It is common with Hughes Syndrome/APS to develop some sort of Thyroid problem.

    It is a good idea to make sure there is nothing making your Hughes Syndrome/APS worse in terms of cognition.







  • Is your Dr an APS expert? Kerstin is right that the dementia is due to inadequate anticoagulation with Hughes Syndrome. On the top right of this page is a pinned post with a list of APS Drs that are recommended. If you r Dr isn't on it ask to be referred to one x

  • Im sorry to hear you are having such problems. I know that the day I was diagnosed mt hemo told me and my mother, because i had stated taking her with me to dr appointments as a backup she could say what changes she has seen for herself and the TIA's. Anyway he told me straight out that if we didn't get my blood under control ASAP that, IF I was still alive n ten years time I would be in total dementia. This is due to multiple TIA'S abd CVA'S. I believed him 100% because I was already having issues mentally. Slow processing, every thing, short term memory loss, can't remember names, even my own kids. We got my blood better but im working on getting my INR higher 3.5/4 as I continue to degrade both mentally and physically. But that does not have to happen to you. Perhaps u need a higher INR or, as previously suggested, a different medication to control your blood better. Then of course it could be completely un related to Hughes and be hereditary. Plz talk to ur dr about both APS related dementia and inherited demebtia. Perhaps a different medication will help u with your blood and eliminate ir at least significantly delaye furthure mental symptoms. Good luck, take good care of urself.

  • I think I should point out that Rivaroxaban is the ONLY oral anticoagulant approved for Hughes apart from Warfarin so if you are on anything else talk to your specialist about the appropriateness of what you are taking. LMWH may be worth trying as a trial too. I had a bad Stoke and although I have some transient memory issues from time to time which can be worse if I'm stressed and put on the spot, I can't say that it's true to tell a patient that they WILL get dementia and if properly anticoagulated it's my understanding that memory will improve not decline. Certainly I've never heard Prof Hughes talk about Hughes that way.

  • I am 43 and was having issues remembering. I actually got mad at my cousin and said she was lying that my uncle has pasted away which he had pasted away several years ago and I was as a pallbearer at his funeral. It seems once on warafin I don't get as confused.

  • I can tell you that even on anticoagulation it can be difficult to remember things. I was at the theatre in May and now the same play was on TV a couple of day ago. I could not remember that I had seen that play earlier in real life. My friend told me I was at the theatre.

    I am myself at an age (over 70) where my friends around me, joke about bad memory with names etc and laugh. Not at me but at themselves and the state of life when you get older. Not too bad if you make notes and laugh a lot though.

    These moments, from half an hour up to an hour of confusion, when I among other thing can not recall if my parents are alive or dead, never happen again after Warfarin. I remember only two of those moments. I am glad I always make notes about APS.

    The brain has been starving of oxygen and have had some damage I am sure. That is why you should not accept going without anticoagulation as long as I did. Not a wonder that the Doctors did not understand as I had micoremboli and they were not seen on a Scan and I myself did not like the idea of "rat-poisson" (Warfarin). Finally after reading "Sticky Blood Explained" I understood that I had APS in 2011 and started Warfarin.

    The best thing I have done. I had my first very bad TIA (small stroke? )in 2002 and put on Baby-Aspirin, but after an operation (a hyperparathyroid-gland) I was worse, so between 2006 and 2011 I was not properly anticoagulated.


  • Maybe mine isn't APS but I go round the alphabet a few times thinking of names even my children and grandchildren which makes me feel ashamed . memory problems are awful Kelly71 so you have my sympathy

  • Hi Kelly71, just one more to add to the advice you've been given. Do you still menstruate? Are your periods regular? Anything changed there? I experienced a lot of short term memory loss last summer (plus mood swings/ depression like feelings) and as it turns out now after several physical and blood tests it was premature menopause (I'm 39). Have a quick Google at common symptoms of menopause and see if it could be something you want to check with your doctor while you're at it (if you haven't already obviously). Good luck!

  • I've had a hysterectomy 20 years ago

  • Right. Sorry about that.

  • I think you should read the 2 different answers APsnotFab gave you 2 days ago! She is an Admin and knows a lot about APS. We all have the illness here.

    If you ask prof Hughes it will take a very long time because he only answers one question per month and also from those who have been on our site for a long time.

    A Specialist who knows APS and another drug than Apixaban which you take today and also more B12 perhaps.

    It is usual to take antidepressants when you have APS. I have been taken a low dose for a long time.

    Have I

  • asked you if you have read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms of APS.

    (I lost the first post suddenly..... sorry)


  • Im obviously no dr. But I beleive the dementia with Hughes/APS is caused by repeated TIA's. Just because they may not be able to view damage left in the brain doesn't mean its not there. I beleive the more strokes or TIA's the worse the dementia. If you can get and keep your blood right then it should lesson the amount of dementia causing TIA's. I could be wrong, its jusy my self educated opinion as well as my experience with APS/Hughes syndrome. I had a approx. 15 minute TIA on September 1st and it took nealry a month to get my messed up blonde brain and my motor skills back to my normal messed up self. I am sure my brain didn't come back all the way as I have had more memory & thinkng problems since the attack. I joined this group after thst TIA as it effected me more then my passed TIA's. Usually it takes a week tops to get back to myself so that one concerned me. Just my thoughts and experience no specialists to bsck up my thoughts just going off my experiences with APS. I do hope u get better and I am sorry for your pain and struggle. I have significant pain myself and it takes a good mental effort to deal with it every day. Especially when I have to work. Got to be a good actress to hide it all from clients. I hope u feel better soon. Stay strong.

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