Worried and wondering

In a nutshell I was told I had a DVT in my right leg in November put in hospital and on xeralto. Went and had a ultrasound on right leg cpl of weeks ago and was told I have another blood clot in my right leg. Went to see the hemotoligist and was told that is not suppose to happen while on blood thinners. Told me I not only have lupus anti cougulant but factor v leiden as well. Not sure I know what all this means except why should I keep taking xeralto if not working and having terrible side effects along with it

5 Replies

  • I am in the office at the moment and just about to get into a Taxi. I will answer this in more detail later! Please hang in there until then!!

  • Hi there, where are you located. Hughes Syndrome/APS needs careful management and the haematologist normally has to work out the best medication of mix of medications to prevent your blood clotting in the future. If in the UK we have a list of specialists to be referred to, if not we can probably still help as we have members and various links we can direct you to for more detailed local help. MaryF

  • Please ask for an urgent appointment with your consultant to discuss the merits of switching to another anticoagulant if the one you are on is not working for you. If I was in your shoes I would be back to them quick smart and demanding they switch to warfarin or LMW heparin. If your GP is managing your care ask for an urgent referral to an APS specialist and if all that fails or you cannot be seen quickly, simply go to A&E and tell them you want to come off your oral anticoagulant because you have two DVT's which is not curing the problem and you feel very unwell - Thats what I would do but then you have to make your own decision! Good Luck.

  • I have an appointment Thursday and these will be some of the things out will be discussing among very many other things. Thank you for your feedback I'm really lost on how to handle this whole matter. Will let you know what happens. By the way I am in U.S.

  • No, I don't have their url at the moment, but check out APS action for a list of doctors in the US who are experienced in treating APS. When I was first diagnosed, my local GP decided that it couldn't be APS because I continued to clot even though he had put me on plavix. My out-of-state hematologist, who diagnosed me had to call him and explain how patients respond differently to different anti clotting meds. I was switched to warfarin, and it was like finding and pushing the "Off" switch on all my clotting symptoms.

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