HELP !!!! Although I've got APS, but I've got an another PE???

I've had APS for many years. I've also have a stent in my groin for which I had a CT scan a few months ago to make sure it was still doing its job and it was all fine. Then a few weeks ago I got a PE, WHY??? Also I was checking my own INR on my machine, and although I have it checked by the hospital, my INR was 3.7, but when I was admitted to the hospital, my blood was actually 2.7, but still, I got a PE, but I did have a fall a couple of days before. Also when I got home I notice that my foot would not flex upwards. I phoned my GP and she told me that it was a Dropped foot. She has referred me to an neurologist at The National at Queens Sq. Why is this happening, I'm in my mid 50's, but all my illnesses are useally for the elderly. My back is gone, and many others problems.

I need help, I'm getting soooooo depressed now. Plus I've just lost my dad a couple of months ago.


24 Replies

  • HI there, sorry things are rough currently, are you seeing and actual Hughes Syndrome/APS specialist off our charity website? As it would help both yourself and your GP if you were under one of these:

    For some people a change of medicine is required, every patient is different. Please call in any favours from family and friends during this difficult time to support you through appointments, also make sure they look at you D, B12 Iron and Thyroid also. MaryF

  • Yes I'm seeing Dr Hannah Cohen of UCH, it is one of the 2 hospitals that deals with APS sufferers, and Dr Cohen is well known in her field. Even she was surprised that I got a PE, I was taking 5mg of Wafferin, but now she has put me on Fragmin Twice a day until she can work out some kind of treatment. I've tried Riveroxoban but it never agreed with me. I've already been on a Fragmin for 10 months then they put me back on Wafferin. I was diagnosed with APS many years ago, but I've had DVTs since having APS.

    But the doctors now are trying to work out the best treatment for my APS. To be honest, I'm getting to a stage that every time I go to the doctors I have something else, and it's getting me down so much that I just want to give up, but I have 3 grown up children, and 4 grandchildren, but they live far away. I just don't know what to do? I really don't. And I've been ill for 23yrs, and it starting when I was pregnant with my last child, with 3 slipped discs, and I've been ill since then.

  • Don't give up, I remember you now telling me who you were seeing, sorry brain fog moment etc. She will sort you, sometimes it takes time. Including keeping an eye on the other things I mention above. MaryF

  • Hi there,

    I understand you selftest. When the lab make a vein blood-test it is always around 1.0 higher in INR than my own machine fingerprick-test. That was what you had at the hospital a couple of weeks ago. 3.7 on the machine and 2.7 in the vein.

    Hope you do not go around with a too low INR. If so you may well have a PE.

    Best wishes from Kerstin in Stockholm

  • It was the same say that I did my INR on my machine. But when I tested it the week before, it was 2.2 on my machine, and if my INR goes under 3.0, I have to inject with Fragmin as well.

  • You must have a talk with your Consultant about the machine and the Warfarin. We are individuals and the differences between the two tests can differ from person to person but the differences must always be the same for each person. That is why you do doubletests a long time with the clinic before you can take care of your own monitoring.

    Did you take a Fragminshot when you had an INR of 2.2?


  • Because my INR was 4.2 a few yrs ago and I got a DVT underneath my knee joint, so that's why I have fragmin when my blood is under 3.0.

    As for checking my own INR on my machine, the hospital check my machine every 2mths, and I got to the hospital once a month, so somewhere along the line my machine was faulty. I remember the first machine that I using was really robust, but when Roish decided that the experiment they did to make sure that the machine worked for home testers, they got rid of it and then I had to buy my own machine, and it's so flimsy, really light and made of a thin plastic. So the old machine was great, although it worked almost the same way as the flimsy one, there was a slight difference. But I can't just blame the machine, there could be another under lying problem, but the tests they need to do, I cannot no longer lay down flat, not even on my side, the pain is so bad, plus my spine will not straighten, so as u can see, I'm in a catch 22. I'm just fed up with the pain I'm in, it's driving me insane.

  • Since I last wrote on here, I've been diagnosed with at least another 4/5 health problems including under active Thyroid, lumber facet joint disease, I had a patch test, well we're can I start, let's say I have to carry a epipen, I've also have lack ok Vit D. So I'm on that for 2yrs, I've had an another TIA. I just don't know what to do.

  • I am pleased you under active thyroid has been picked up, that will make you feel awful if not treated and low vitamin D makes a person feel dreadful also. If you iron is low your thyroid will struggle to work and uptake the medication, if they give you iron, make sure you leave a four hour window away from the iron with the thyroid medication. You will feel better than you do soon. MaryF

  • My iron is fine now, it's the lack of Vit D now and the under active thyroid. Why is it they say don't eat before taking the med for the under active thyroid.

    Thank you

  • I think it helps with the uptake of medication, I don't eat for an hour, and in particular, dairy produce. and a four hour gap with the iron, I have plan with it all that I follow. MaryF

  • Firefoxie, don't give up. I'm 38 and have had APS for about 8 years (maybe longer undiagnosed). I was told I "acquired" the syndrome after being ill for a long time, which caused clots.

    I have never self tested and other than short periods on heparin injections, have always used warfarin. Various doctors have suggested self test, others point out the difficulty of getting the strips on prescription and Making sure the machine is calibrated means it's easier to stay on INR checks through docs to local hospital. I was also advised riveroxaban is unsuitable for me, because of the way it does anti-coag.

    I too have other health issues that link to, or triggered the APS and feel a bit like an extended medical project, but with so much going on, it can take time to balance mess, fully diagnose issues and get well. You need more than an APS specialist - ask to see a dietician/nutritionist, who can advise on dietary changes to make up for illness related deficiencies.

    I hope they figure it out - keep it together, think of the life guys, who will want to see Grandma/Granny/Nanna, especially over Christmas. Good luck!!

  • Thank you for your experiences, yes you do feel like a medical project, my GP calls me complexed, but she has been great, I can't say anything bad about her, also when I see her, I'm the lucky one that gets more than the 5/10 mins that your allocated and half the time she comes out to see me in her lunch break.

    I've been ill now for 23yrs, I loved work, I had a great job, but as time goes by and I'm now wheelchair bound, I lost all my friends, my family have been great but because it's been a long time now, I see them when they can get here, they all live quite away from me. I've missed out a lot of my grandchildrens events, I do speak to them daily. So you say about Christmas, and I would love to stay with them, but my needs are a lot, and when I need to sleep, I can't no longer lay flat, so I sit up sleeping. So how does it look to my grandchildren, if you know what I mean. I don't want sympathy, just fed up being ill all the time.

    Sorry for going on.

    Thank you

  • Hi sorry to hear you have had a PE this also happens to me quite a lot, it intresting that you say you self test i did do this a few years back unfortuntaly i had the same problem number being quit a lot out! However i saw my consultant last week who seems very arragunt lately he said the testing machines are 100% accurate , i said well why was i still getting PEs and clots and getting INR results of 2 diffrent readings within an hour of been testing from machine and the vain!! and he just changed the subject, Thankfully i have a very good GP who tests my bloods twice a week as my INR readings are always up and down,

    Good luck hope you get sorted soon x

  • Thank you, as I mentioned in my last message, I've always suffered. But did u have the first machine, it was really robust, and I felt safer on it, plus I never got a different reading.

    Thank you

  • HI yes i have had 2 machines and had problems , i have seen some of the replys it seems other people have had the same problem.

  • Sorry you're feeling so bad right now. Kerstin is right- you have to parallel test for a while. eg if your Lab test is 3.7 and you machine is 3.0 as long as the difference is consistent it should be OK. If the difference varies wildly then you machine could need recalibrating. There is no "right"fix for everybody. Hope you get it sorted soon.

  • Thank you, but I had taken my machine for recalibration around 4 weeks prior to my PE, and my machine was exactly the same as their machine, plus I had my bloods taken that day too, and my blood was the same. I was taking 5mg each day.

    Im back on Fragmin again, so I don't use the machine now..

    I'm due to see my Doctor in 2 weeks, she said that there are other anticoagulants I could try. I've already tried Riveroxoban, but I reacted to it, so she put me back on Wafferin, thats when I got a PE again.

    Again thank you.

  • I had a quick look at your previous post and hair loss. I haven't experienced this so you are quite unlucky there as well :( For what it's worth I also had a PE on Warfarin but moved to heparin as my INR's were all over the shop. Got a DVT on that then changed to Rivaroxaban-still getting micro clots and then had aspirin added. I'd have to say most days I feel pretty good but I'm aware when there is something wrong (other that a bit of old age!) and I need to see someone. Other than hair loss (and believe me I'm not belittling this at all -I like my hair too) did you have any other side effects?

  • Yes, my legs got so heavy and swollen, ulcerated, etc, so I had to come of the Riveroxoban.

  • Definitely not for you!! I do hope you will be able to find some relief soon. Trouble is you feel so miserable while they sort you out.

  • Hi Firefoxie,

    You have got a good Doctor in Hannah Cohen obviously. That is good and now you are on Fragmin again and that way it may be easier to stay "in range" with the blood.

    Also listen to what Mary says about Thyroid and D-vit etc etc.... she knows those things how important it is. Talk to your GP or Dr Cohen about that!

    I am sure you will be better soon and hope you can see your children and grandchildren for Christmas.

    Merry Christmas in advance to you from a cold Stockholm!


  • Hi Firefoxie

    Always sad to read that one of us is really being put through the mill, I hope things improve soon.

    A couple of general observations. Firstly the amount of warfarin a person takes isn't a very good guide as to the state of their INR. We are so different some may only need to take 2 or 3 mg to acheive the same INR as others may need to take 7,8 or more mg.

    Secondly, if you haven't heard of spoon theory, look it up (one site is and perhaps mention it to those around you who may not understand how you are feeling. Spoon theory described what many of us go through very well.

    Best wishes.

  • Firefoxie, I hope you at least feel better soon - being ill and feeling ill are clearly linked, but if you can function normally, then it's a massive boost and I always find it helps me recover quicker.

    I take 11mg (it can be linked to weight - I'm tall and broad). I only ever had clots as I came off of warfarin in the past, but that means they MUST have developed while I was on anti-coag.

    Silly question, but did they bridge you across meds - reduce one med, while the other builds up? Warfarin can take a week to become effective. Also, is there anything that would mean your target INR needs to raise? Mine is 2-3, but many have a target of 3-4.

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