Magic? :)

For those of you who have Hughes diagnosis and have been properly anti coagulated for some time...

Did you suffer from very extreme fatigue before diagnosis?

If so, what do you think causes the fatigue in Hughes?

Is it a common symptom?

Most importantly, did it magically disappear after anti coagulation?

Also, for those that have headaches, did anti coagulation help with those?

24 Replies

  • Yes I had extreme fatigue and unfortunately no it didn't disappear on coagulation

  • Hi

    I had it too and I get it less on anticoagulation but it has not disappeared, sadly.


  • Hello there,

    I have had extreme headaches & fatigue for so long now, despite diagnosis with hughes in 2001 and no anticoagulation until very recently due to DVT - I still have both ' and have not had them confirmed as symptoms of hughes - I put it down to long hours & stressfull job that they were just part of my life.

    sorry unable to help but I would not say that I have been on anticoagulation long enough to see myself what gets better and who is going to confirm what symptoms are def associated with this condition.


  • I had extreme fatigue just before diagnosis-I would stagger out of bed, get dressed and promptly lie down again. Still get the odd headache but the visual disturbances and the random dizziness has been gone a while (fingers crossed! :) I get "tired" now rather than fatigued but I'm just not 100% sparking on all cylinders.

  • Hi

    I had migraine and other types of headaches before the stroke (didn't have diagnosis until 6 months after). I can't remember what the fatigue was like before but it was dreadful after and whilst some was from the stroke, I think it was

  • Sorry - rest of post!

    ,,,from a flare of APS. Warfarin took care of headaches, along with Topiramate to prevent migraine. When I first started Warfarin and stopped Clopidogrel I had really bad headaches but once my INR was over 3 these stopped. I now just occasionally get headaches when I am asleep - so only know if I wake up in the night! For fatigue which did not improve on Warfarin my consultant suggested Plaquenil which has helped a lot -before I would have days where I made it to shower in the afternoon and then was crying in the shower because it was just too exhausting and I just wanted to lie back down. Since Plaquenil kicked in I don't have days like that, I still get more tired than 'normal' people do, but have more energy.

  • I think my circumstances are complicated - I was told I had developed APS following several years of being I'll, reduced mobility and activity and several DVTs/PEs that were attributed to the "main" condition (Ulcerative Colitis). I was occasionally tired, but knew I was losing blood, so it was put down to anaemia and later the severe surgery.

    For me the trouble with fatigue started when the UC was fixed and I was left with what I considered the surround issues - developed gluten intollerance, negative for celiac but symptomatic, APS, so on permanent warfarin and anaemia.

    I have been able to resolve the other symptoms, but the anaemia (and hence fatigue) remains, so I am now going through a lot of tests again to confirm it was UC (and not crohns), that I don't have celiac (despite two tests negative) and for possible other solutions. In the meantime, I exercise as much as possible and my back up plan is haribo!

    Hope you can find a reason, but maybe if they haven't, the doctors should check for anaemia too?

  • I would have to say that for me personally I still always feel tired and still get migraines regularly but they seem to come in clusters. I'll suffer 2 or 3 attacks every day for about 3 days then nothing for a few days then another cluster and so it goes on. I have had my INR range increased from 2.5 - 3.5 to 3 - 4 but it hasn't made a difference to me. I think it just depends on the individual.

  • Hi leighfarlow,

    I am sorry you feel so bad and tired. If they have raised your INR it must also be kept in the level 3.0 - 4.0. To keep it in range you must cheque your INR rather often. If you take painkiller not regularly for instance, that will put your INR on a rollercoaster. I selftest and test myself every second day so I know that the INR for most of us goes up and down during a week.

    I have 4 positive antibodies (included Lupus Anticoagulant) .

    I wonder what about those of us who have only one antibody positive. It could perhaps be easier to keep the INR in a steady state. As the antibodies fluctuate over time, the INR can fluctuate aswell. Interesting thought!

    Have they tested you for Sjögrens syndrome? If you have that you will feel exstremely tired.

    I have heard that you now can have a selftesting machine. Perhaps that is something you could benefit from.

    It is a shame that here everyone around Stockholm can have a selftestingmachine but you can not! So very unfair!!


  • Hi Kerstin No I haven't been tested for Sjogrens syndrome but am due back at St Thomas' later this month so will ask about this. I must admit I have never been given the actual results of the tests I've had done so not really sure what they are. I was told however that I have triple positive APS.

    I have just started self testing but am still monitored by the hospital and they don't seem to understand that I need to test more often than other people because of the APS and still give me a 3 week period between tests but I have started testing once a week just to keep an eye on it. Thanks so much for your input it's nice to know someone cares.

  • Hi again,

    Ask to get a copy of the results so you know your blood-results.

    It is not so common to be trippel postitive, I have positive antibodies for Cardiolipin IgG, IgA , Beta2Glycoprotenin1 and Lupus Antigoagulant.

    I have enough strips and needles to test every second day from my Hematologist. Which I do. I have done this for 2 years. They know me and I doublecheques only every 2 or 3 months now. I follow the INR how to eat of K-rich vegetables and tablets.

    Take care so you do not change your tablet intake the same time you change the vit-K vegetablets. That will be difficult as it might be "double". It is difficult before it works.

    I could not live without my machine. I hope your migraine and other symptoms should improve a lot when you are stable on your INR. Hope it is over 3.0 otherwise under 3.0 most of us feel bad. I have now a therapeutic level of of 3.2 - 3.8 in my INR.

    Good luck to be stable.

    Kerstin in Stockholm

  • Thanks Kerstin I will ask for results when I go later this month and hope also my INR stabilizes soon.

  • Hi I get a lot of headache and feel tied all the time warfarin has not helped I am also on a lot of pain medication so could be die to that. Just awaiting tests for thioroid to see if it is causing the tiedness.

  • For me, the warfarin pushed the "off button"on the migraines and the mini strokes. The fatigue improved greatly with warfarin though it's still recurs from time to time usually when I'm coming down with a cold or something.

  • I also used to get up go downstairs make breakfast and then lie down again, in fact I used to spend the entire day fighting sleep and often napped ,with severe sleep paralysis attacks.

    I am only on aspirin ,but the sleep paralysis attacks have all but gone and I only require one nap per day (usually around 10am) but I still tire extremely easily

  • Hi, my fatigue varies I seemed to go on one treatment then after a few years that no longer works. It was wonderful when I first went on Warfarin. Now I do still get the odd few days when I am suffer with bad fatigue but this has been put down to the menopause and I am struggling to get on the right HRT treatment. But all of my other symptoms seem to be almost non existent.

  • I have extreme fatigue and daily headaches. I have used both coumadin and lovenox, and neither offered any relief from those symptoms. Also severe brain fog: cognitive dysfunction, memory loss..etc. Also was not helped by anticoagulation. Alot of what you read about APS will tell you that coumadin is the magic bullet but this is not the case. This has caused problems for me in the past. A previous Dr read Dr Hughes 1st book, and then told me that I can't possibly have these symptoms because coumadin always controls these symptoms. You still have to be anticoagulated to prevent future incidents of clotting, and there are many people who do get some relief from their symptoms. So maybe it will help you, I hope it does.

  • It didn't disappear but I have good periods of "regular" energy. I think it seriously has to do with two things. If my INR falls nearer to 2 or lower, I feel tired and have brain fog and it's not good. Right now my INR is 2.5 and I feel great all around. Another things that affects my energy level is this. When My energy level is high, I tend to overdo everything, esp exercise. Then I suffer the following week. I have to embrace the high energy levels but remember also that I have APS and have to not overdo it--easy does it but don't overdo. A year after my stroke and on warfarin and hydroxycholoroquinine and I'm definitely much better with good self-care and good md care! Wishing you the best.

  • I am glad ot hear this Loretta. I "spoke" to you a lot half a year ago.

    Wishing you the best!

  • Hi, I have extreme fatigue at times which comes in waves of how bad it is, as I also have other disease it is hard to find where one ends and another begins. My thyroid was out whack and since having some treatment for that it has helped with some of the fatigue but not all of it. I know also that Lupus and Sjogrens is also very tiring....I have given up working out which disease is doing what!!!!

    It is also very important to keep an eye on your levels of vitamin D, B and iron as a lack of these optimum will cause even more fatigue.


  • I'm on coumadin since august and not stabilised yet. My INR has move between 1.8 and 7.

    What i noticed is that over 3 i still have moments of fatigue but over all I'm have much more energy.

    When my inr goes under 2.5 i am feeling very very tired to the point i cannot do anything.

    So for me, a correct level of anti coagulation helps a lot.

  • I also used to have very difficult fatigue when I was not anticoagulated. I still get that, but not so bad as before. I remember once when I didn't have the diagnose yet, I had had a TIA and was on Aspirin. I forgot Aspirins home when we travelled to summer cottage in weekend. I was so so fatigued, that I slept the whole weekend and had to lie down all the time. Afterwards Aspirin was not enough for me and I got also Warfarin. With both of them I feel much better. Still I have memory porblems and fatigue that comes and goes.

  • Glad to hear from you Leenalina!

    Testing memory now: is it in the North or South of Finland you live?

    Here spring is coming slowly. All the springflowers I have seen today. In the North of Sweden it has been exstremely cold lately and very windy. It had come 2 m of snow on Sunday I think it was.

    Greeting from Stockholm and Kerstin

  • Happy to hear from you! :) I live in Central Finland and we have still snow, but not in towns. We live in countyside. It has been very windy here too.

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