My husband and I were having a discussion about how likely it is that I will get dementia/Alzheimer's due to having Hughes, can anyone help me out here, are we more likely to get it because we get brain fog/memory issues or is it a completely different thing! He thinks because I have an auto immune condition then I am more likely to get it, is he right? I say that it is different and just because I have problems with words/brain fog etc that I am not necessarily a higher risk than anyone else.

Incidentally my mother had a heart attack at 70 and then went on to have TIA's she was then diagnosed with vascular dementia. I think she also had Hughes but was never diagnosed until I saw on hospital records recently that she was suffering from antiphospholipid syndrome! (She had a PE years ago and then recently after a fall got a DVT, she is now on Warfarin also)

16 Replies

  • Hi Molly,

    They have investigated me for memory loss here in Stockholm. What I have found is that so very few doctors understand this illness.

    Therefor I will relate from the best person I believe we have on APS, Prof Graham Huges, what he writes about this in this book "Highways and Byways":

    "Hughes Syndrome and Alzheimers syndrome are totally different. For a start, the Pictures on MRI brain Scans are totally different, Hughes syndrome patients having either a normal MRI, or in more severe or untreated cases, small "dots", ranging from a few to a dozen or more.

    It is almost certain that memory loss and other manifestations of cognition impairment will come to be recognised as the commonest manifestation of Hughes.

    As with a number of features of APS, the symptom often responds well - sometimes spectacularly well - to anticoagulation.

    It is an interesting fact that many patients with neurological features of Hughes syndrome (including memory difficulties) require "a higher than usual " INR - often between 3.5 - 4.0.

    The aetiology of the memory loss in Hughes syndrome is still under investigation, though the often dramatic improvement with anticoagulation again suggests that circulatory "sluging" must play a significant part." Amen

    Hope you have an APS-Specialist that understands and that you are well anticoagulated.

    Cross-words puzzle, good sleep, healty food, exercising can help I have found and avoid if possible drugs that will affect the braincapacity in a negative way. This i was told by the Specialist of memory also. I will be 71 next month so I am also soon starting to have my age against me with regard to my memory.

    Best wishes from Kerstin in Stockholm

  • Both Alzheimmers and autoimmunity share a root cause in inflammation. And yes, stroke damage has a strong correlation with later dementia. But are you or I at greater risk then the " average" person who carries, as many of us do, untreated pre-markers of dementia? Probably not. The greatest indicator of risk remains age: the older the patient, the more likely the chances. Remember, Alzheimmers is basically a disease of failure to take out the trash. Exercise, both physical and mental, helps move that blood/ Trash trucks through the brain so those nasty plaques can be booted out.

    But try this on your husband: in the absence of real data, an argument may be made thart our therapeutic level of anti coagulation may actually reduce our risk as we age as our thinned blood may be more likely to flush out those nasty trashy plaques!

    Take heart! But take precautions! My volunteer job is to visit nursing home patients, so this issue is constantly on my mind. Not just you or me, but we're all at risk and we all would be wise to take preventive life style measures and draft what in the U.S. Is called a "living will" so family members will not be saddled with horrendous treatment decisions, because while in your right mind, you explained just what kinds of treatment you expect. For you. And your husband. And all of us.

    Welcome to the 21st Century!

  • Hi guys thank you so much for your responses. I will get the book "Highways and Byways". I am so similar to my mother in the way we mix things up that I do worry about it especially when I use the wrong words. I have had a brain scan under the London Bridge hospital and it was normal but my husband constantly talks about me getting dementia. I have sent him the links to your replies though thank you.


  • Hi, I note you have had some great responses already, and the book reading idea is an excellent one. MaryF

  • Hi Lure2

    Where did you get Prof Hughes book "Highways and Byways"? I cannot find it and understand it is not readily available?

  • Hi all. I too was intrigued by "Higways and Byways"--Thanks, Kerstin.

    FYI: Here, in the U.S. I found it on Amazon, but very pricey: over $50 for the paperback. The "Kindle"/electronic version, however, was just under $20 (which I bought). Thanks again.

  • I do not remember it but I guess I found it in Sweden. I have many books about APS here and some of them I have bought from this web site.

    Springer-Verlag London 2013

    If you have the possibility, try to selftest as I do. I test every second day and then I can see when my INR is not in its therapeutic level. It is too low today (3.0) so I will take 1/4 of a tablet tonight.

    When I started selftesting I noticed how often and how much the INR could change only in one day if we did something very special or had a flew etc. I believe it is important to keep the INR in its therapeutic level to avoid a lot of neurological symptoms.

    I have like most of us difficult to find the right word sometimes. It is so very frustrating . It gets worse if I am nervous or stressed or if I think of it and others will notice it.

    Best wishes to you and your mother also. I do hope that the warfarin works well for her APS.


  • Hi Kerstin

    Thanks I found it and ordered it. I have thought about self testing and my husband thinks I should but I have not approached my gp as I thought I may get a little obsessed with it!! But it is all over the place at the moment and the nurse is trying to get it back up to over 3 again. It is very frustrating as I feel so much better when it is higher.

    Thanks Sue

  • Keristin: Thanks for all you contribute here. It's odd that here in the land of Columbus: no one has caught up to the "Auld World" yet. My GP (General Practitioner) has refused to move me up to 3.0 or beyond for my APS. Every time my INR gets accidentally "beyond rage" at 3.0 he panics but I feel better. I'm brilliant when drinking Scotch or my INR is North of 3.0. "No one gets outta here alive!"

  • Yes, It is so unfair !

    I saw Mozarella had been able to selftest. There are so many special regulations and rules.

    I always drink one glass of red wine for dinner. Get a lot of energy from it and I can walk on a straight line afterwards.

    Thank you Danny!


  • Google Dr mercola curcumin. You might find it of interest

  • Thanks

  • I do not understand what you mean with "obsessed" with it.

    It is important for you to be in the therapeutic range if you are on warfarin to not have any more dangerous symptoms of APS like TIAs, DVTs strokes etc. To selftest is the best way to avoid those. But is costs perhaps or is not possible for all of us. So sorry in those cases.

    By the way how old is your mother? How is she?


  • Hi Kerstin

    Lol what I meant was for me it would be easy to want to look at the results everyday and I understand what you mean about it being important but I feel for me the risk of testing every 5 minutes would be too great. It is not the cost at all.

    Mum is fine she had a PE years ago and her symptoms looking back at her life are very similar to mine in a lot of things. She is 80 next week but did not even know it was my father's birthday on Sunday so she probably won't even know it is hers or why we are celebrating. She goes to day care now twice a week which is a god send to my dad. it is an awful disease and one I would not wish on anyone. I have just finished reading the book 'Still Alice' it was very sad and so true but gave me an insight into what mum is thinking. Some days I feel as if I actually do have dementia as the confusion is .....well so confusing!!!lol Then other days I am great and on top of things!!

    I am doing mine and my husbands family history which keeps me busy and also keeps my mind active which is great. I now only work two days a week as I found I could not work full time it was too much, I get tired very easily. The joys of Hughes I guess.

  • I can tell you that one year before I started warfarin, for one hour, I did not know what occupation my two grownup girls had. At the same time I managed to talk with a good friend on the telephone and I could take time that the confusion lasted one hour as I looked at the watch. At once when it was over I wrote down what I had been through. It was like living in two separate worlds .......... most frightening.

    An other time, for half an hour this time, I did not know if my parents were dead. My father died in 2000 and mother in 2009, one year earlier it must have been. These two events were special and very frightening. I thought that I was going crazy.

    After warfarin I have not had any events like that anymore.

    I wish that your mother will have a correct INR also to keep her away from bad confusion and feel much better. Hope she will have a great 80th birthday next week!


  • If I spent my time wondering what I might get I would drive myself insane. I might be run over trying to cross the road tomorrow and then it would all be a waste of energy.... enjoy today whilst you have it and let tomorrow take care of itself :-)

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