Once you are on life long warfarin, do you still expect to get any of the symptons associated with Hughes?

I survived life threatening PE's after a long haul flight this xmas, and was told from day 1 I would be on life long warfarin and the clots were so big. Now I've tested positive for Hughes, but it hasnt changed my treatment at all. Now I've read the other symptoms of Hughes, I havent suffered from any of them, in fact until the PE's I've never been ill and would consider myself to be very fit.

what I couldnt understand from the definition of the possible symptoms described on this site is whether they still apply once you are medication? i.e. anticoagulant's dont cure APS, but do they reduce/prevent the symptons?

12 Replies

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  • I am not sure of the answer, though someone on here will have more information, I am 45 years old and suffered mayor clots in my kidneys and brain when I was 28 and first diagnosed with APS, although the damage to my kidneys was unrepairable, I have been on warfarin since the episode and always worked full time and never had another clot incident since (touch wood), I think APS effects everyone differently, and though its good to know as much as possible so that if you have the sympthoms you recognise is as part of APS, as quite often doctors won't! - it can be quite frightening when you read them as I know I first thought OMG! shoot me now!! Lol! So be aware but bare in mind you may (hopefully) never get any of these sympthoms - take care :) xxx

  • I have been on warfarin for 12 and a half years with no further problems. Having said that there is always a chance for complications. Warfarin is a preventative not a cure. Flunctuations of an INR always happen.

    I might never have another clot but I cannot take that chance going off medication.

    My introduction to APS was an arterial clot causing a massive stroke followed by a large DVT, ankle to knee (L) leg, and a PE in the space of a week

    I was 44 at the time of my stroke

    BTW I returned to work and complete 4 days a week with wednesdays off, same job as pre stroke. Network specialist in data communications

  • Hi there, I had a PE nearly 2 and a half years ago. It took about 18 months to recover from the PE and since then I have been learning how the condition of APS affects me. Its true that its very individual. The anti coagulation medication will protect against clots, however day to day I get different symptoms, some days are better than others.

    What I do get is extreme fatigue the day after exercising, I get headaches, sometimes it affects my mood, I feel tearful, I cant remember things, peoples names in particular. Sometimes I feel confused and muddle my words around, or what I am saying doesnt make make sense. I get migranes sometimes, joint pains, that sort of thing. Sometimes its debilitating, other days low level stuff.

    INR fluctuates according to hydration levels, what we eat, physical activity, and stress, its impossible to regulate all of those to create a perfect scenario every day, but being organised and taking regular rest breaks is important....oh and knowing when to quit and take a break, rather than carrying on.

    Hope this helps

    Sara xx

  • thanks for taking the time to answer. It does seem a very individual effect, particulary as the after affects of any clot depends on where it happened, and thats before the individual reaction we each may have with the anti-coagulants.

    My story is that I'm 42, always been fit, never been ill, dont smoke, dont drink, never been fat etc and frequently travelled to China/India/US. I started to get breathless about a week after coming home from LA at xmas, ignored it for around 10 days assuming it would sort itself (I've never had anti biotics and getting appointment at GP's is a nightmare), but then it got bad and got rushed into A+E where they found massive bi-lateral PE's. They gave me the clot busting drug and within 10mins I felt fine.

    Since then, I've gone onto warfarin and my INR has been rock solid between 2-3 and feel fine. I'm back at work, down the gym, swimming, walking. I also had a heart stress and lung function tests on Bupa to check the PE hadnt damaged me and got the OK.

    I'm not trying to show off or be in denial, and my main feeling is one of fortune as I realise it could have been much much worse and feeling as I've got away with a close shave. Yesterday was the first time I'd ever heard of APS, and last night looking through this site was the first time I felt like panicing as people's stories seem to be so much extreme than mine and I'm not sure whether peoples symptons are due to the effects of their initial clots, or their reaction to anti-coagulants, or are what you can expect even if once you are correctly medicated.

    cheers

    Rich

  • Hello Rich. Yes, I think you are fortunate to have found a solution to your clotting problem so quickly after the event. Did they test you for APS antibodies? Are you certain of the diagnosis?

    I think that even if you are on Warfarin, if you have high levels of the APS antibody proteins in your blood, you may continue to feel some effects of APS like sore muscles/joints, days of tiredness etc. But, I think it's difficult to say for certain whether these are truly symptoms of APS or just a body getting older :)

    In my case, I've been on Warfarin over fifteen years, am forty-eight now, and had several TIA's before going on Warfarin, but none since. If my INR gets too low, I do have visual disturbances and a feeling of not being able to think of the words I want as quickly as I want to speak them. My therapeutic INR is 2.8 - 4.2. Many folks with APS try to keep the level between 3 and 4.

    I swim vigorously and walk regularly as well. Some days I feel tired or sore, but I don't let this keep me from a regular exercise regimen. I usually feel strong and energetic. I, too, am grateful that I don't have some of the more severe effects I've read about on this and other similar sites.

    - Jeanette

  • Hi Rich

    Really glad that you are doing so well. My first clot was in 2006 when I had a PE. Like you as soon as I was given the Heparin within 10 minutes I felt a lot better.

    I dont know if I was tested for APS at that point but was told at the time they did not know what the cause was, I suspect that my tests came back negative as they have done ever since. I was put on warfarin for 6 months and then it was stopped. That was the standard treatment for a PE without a positive APS.

    I had already been dx with Hashimotos ten years previously and two years before the PE told I had fibro. Over the course of the next 6 years I had increasing symptoms, particularly neurological and even went to a Neurologist who did scans but ignored the spots! he once again put everything down to Fibro. Two months later I had a stroke.

    I was then tested for APS but once again my tests all came back negative but due to the clinical picture which all pointed at Hughes I went to see Prof Hughes privately at London Bridge for a second opinion and he dx both APS and Sjogrens. I was put straight on Heparin and have not looked back.

    The point Im making is that I don't think you have to have symptoms or get worse, as long as you are anti-coagulated and continue to be at a therapeutic level you should remain stable. Just be aware of your body without it taking over your life and I think you will strike a happy balance. Its also important to find a doctor you like and trust and to have your checks when you need to.

    You have had a lucky escape but on the other hand you have also found out what you have and can treat it before any real damage has been done.

    Go and get on with your life but with a healthy respect for what you now know you have.

    Good Luck.

  • Hi Rich

    I was diagnosed with APS in 2002 and have been on Warfarin since then, until a couple of months ago when I converted to Fragmin (Heparin) injections as a trial.

    In 2006, I had a clot in my right hip and I have had clots affecting the bowel and ears too, since. So, it is possible to get clots when on Warfarin.

    Good luck & best wishes.

    Dave

  • Rich,

    I was dx in 2001 after a series of TIAs/mini strokes. I began having these annual winter "arthritis flares" (as we thought them to be) which my rheumy (and I) attributed to winter weather, strain of walking on ice, wearing heaving boots. But this past flare went on for more then a year; summer came and went and the pain persisted and, in fact, morphed and grew.

    Now I (me leading the way and my docs following) realize this was the APS. We have raised my INR levels (I was below that recommended for stroke patients.) I am hopeful that this Rx tweak is going to kick me back into blissful disregard.

    The morale of my story: don't obsess, but be aware. This disease is one hell of a trickster. You may go years, decades even with only the Rx details to worry about. Since the genetics/environmental triggers of autoimmunity is still nebulous you may one day encounter a bizarre something which will inflame your autoimmune system, and off you may go down some other bizarre symptom/diagnosis road. Again, don't obsess. But be aware.

    For example -- the only problem I had between 2001 and 2011 was this pain-free migraine aura I got while back packing at an altitude of (only!) 3800'. I am an avid hiker, but this was my first time back packing -- and the pack was much heavier then what I had trained for. We now suppose it was the weight of the pack pushing on the brachial arteries which slowed the blood enough to form clots which happily flowed to my visual cortex which turned the forest (subjectively) into changing shades of psychadelic orange, green, purple, blue, repeat (it was kind of neat actually -- like an invisible colored screen being pulled down across my vision from left to right.)

    So don't worry, be happy, but pay attention to what your body is telling you.

    And welcome.

    Gina

  • Hi Rich,

    I had a DVT in 1994 and was diagnosed with APS straight away (lucky me!). I have taken warfarin since then (except during my pregnancies) and haven't had any APS symptoms. A few years ago my haematologist told me to come off the warfarin as she felt that as I was symptom free that I would be OK without it. I pointed out that I was probably symptom free BECAUSE I WAS TAKING THE WARFARIN! Thanks to a stiffly worded letter from me and assistance from my GP, I have stayed on warfarin and symptom free ever since!

    Emma

  • Thanks all, especially the ladies who have the experience I hope to have which is something to be aware of, but not a massive life changer.

    I still have a couple of questions.

    1. Is there anything you shouldn't be doing?

    I'm thinking mainly of over exercise, I'm playing close attention to my hydration, but if I feel OK, is there another reason why heavy exercise should be avoided? I used to do the 36mile round trip commute a couple of times a week for instance. Long haul flights? At the moment, I've been told now I'm on warfarin, there's nothing stopping me doing whatever I feel I can do.

    2. Jeanette's answer said muscular ache/pains are a side effect. I w on heroin injections for the first month or two out of hospital and felt fine considering and was already doing a few amount of exercise. When I swapped over to warfarin, I did notice stiffness/pain in my chest. It is very minor, usually only if I stretch or sleep/slough in a funny position. Initially this concerned me as I actually hadn't had any pain at all when I had the pe, so I got my heart and lungs checked out and they are fine. I did ask the haematology consultant if warfarin has such a side affect and she said no, most likely normal getting older pains...

    If it is anASP side effect, then might this mean my warfarin dose is too low? It's 2-3, and this level was decided upon before I had had the two blood tests to confirm asp.

    Cheers

  • Rich: you have more energy than I have ever had in my life! Good on ya!

  • Rich - Prof Hughes always says that he likes INR levels to be between 3-4. He likens it to cream, saying its like full and half cream. When the blood gets too thick it needs to be thinned and APS patients do better when they are on half cream!

    The problem you are going to have is convincing your docs to allow your INR to climb that high. Perhaps ask if you can go to 3 first and see if that makes a difference and then maybe push it to 3.5.

    I don't know about long haul flights and warfarin but again prof Hughes told me if i was doing one to inject Heparin mid flight. I use Heparin not warfarin as my anticoagulant. perhaps ask if you should do the same.

    I think its always good to be properly hydrated at all times but Im no good at exercise so will pass that over to somebody else to answer!!

    Perhaps look at the HSF website where there is lots of info. When I first got dx I joined and they sent me loads of interesting stuff.

    i think you are doing great!

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