when wil i feel any normality again

hi i have been recently diagnosed With APS., there are so many things have happened that im feeling lost, it has taken 6 months so far to recover from dvt and bilateral PE im getting infections all the time and suffer with fatigue in currently being weenned of enoxaprin injections and on to warfrin. does anyone have an idea how long this episode can last

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  • Hi there, firstly welcome, the main thing is that you have a diagnosis, thank goodness for that. Also if you GP is doing tests and things, do make sure they look at your Vitamin D levels, also iron and B12 as these can go a bit low and make you feel much worse, also to run a Thyroid panel. There is a good book available by Cath Atkin about diet and warfarin which many are finding invaluable. Please feel free to ask us questions and gain information. Also do have a good look around the charity website as it contains good information. MaryF

  • thank you MaryF i have the hughs foundation information and as a result im. taking mulltivitamins to boost me i read about vitamin d and will ask gp about this. as for the tyroid ,my mum has this problem and i from being young have been tested but the comback negative but i will also mention this to my gp as other members ( on the female side) of my family have been diagnosed

  • Hi Dawnzy and welcome.

    I want to reiterate what my colleague Mary has advised you. It is important that you have a consultant who understands APS/Hughes Syndrome and there is a list of such consultants in the UK, on the Charity's website, here:

    hughes-syndrome.org/self-he...

    Where are you from in the UK? This will help us and others to help you.

    Now you are going onto Warfarin from Heparin it is important that those managing your INR levels understand that many APS patients need and INR between 3.5 & 4.0, rather than the 2.0 to 2.5 of non APS patients on Warfarin.

    Best wishes.

    Dave

  • thank you Dave I live in south shields out side of Newcastle upon Tyne, haematology are currently looking after me but I haven't seen snaps specialist as of yet.

  • Ok. You should ask to be referred to one from our list that I sent you recently.

    The neurologist, David Bateman, who used to be in Bath, and who first diagnosed me with APS, is now in Sunderland.

  • I hope you feel better soon. I can't work out what is APS and what is exhaustion from work (I'm a nursery teacher btw). I'm not on any meds as I'm trying for a baby. I do worry about my health but I'm not sure what help I can get?

  • Hi I was put on wafarin in March 2015, my INR levels still not stabilised! And have been getting levels checked every week! Up until a month ago whereby its 2-3 weeks which has been great! But this week I'm on antibiotics due to infection so getting twinges - hoping it will pass. Im not completely back to normal as if I do too much levels drop and also can't get drunk on wafarin - lol! But I'm staying positive. I hope you start getting some normality on your life.

  • I feel like someone just told my story, hope you get better soon. I have been on lovenox shots since 5/30/2016, and added warfarin in the last 3 days, my INR was 1.2 so now have to have both lovenox and Warfarin and have INR checked over the next few days. I got DVT and few days later PE that was in March 21, never have been at the level I should be. I feel very tired and so far from normal.

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