I do not have a diagnosis of Hughes Syndrome - APS!!!! However, I have been on Warfarin since 1993 (for 12 months) and went on it for life in 1996 after repeated episodes of DVT and PE. I had a 4 month spell on Apixaban in 2019 but it seemed to worsen other health issues so it was discontinued.
I was recently in hospital twice (Dec 19 and then Jan 20) for Severe Pneumonia. They found another DVT in same (Right) leg as other times.
Every medic who speaks of this say I just have to live with this now as the only treatment is Warfarin and I’m already on that.
Can anyone tell me anything I do not know about this history, which has included heavy bleeding through my mouth at night and morning and no-one can find a cause and I am having to accept this as normal, even though it is horrible. Medics have given up on helping me.
Are these issues part of The Hughes Syndrome and any suggestions possible?????
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Splodge60
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The bleeding can be part of it if you have low platelets.
Sometimes platelets are used up in the clotting process.
This is only a , “sometimes” scenario, by no means often.
It should simply be checked, and I would wager it already has been- but you need to find out. Is there a way to do that? Log into your patient portal and look at your labs?
Otherwise if all your labs look ok - INR not silly high, no. It’s not normal for APS. It’s a clotting disorder, not a bleeding disorder.
Your not on aspirin or clopidogrel alongside the warfarin are you?
Hi, just read your bio and you have a lot going on, seems to me the medics are just looking at their appropriate part of you and no one is looking at the whole picture?
While you were in hospital, do you know if your INR was stable? With infections and medications etc, could make your clotting/bleeding go hay wire.
You have every right for answers and maybe it's time to be seen by an APS specialist, either speak to your GP or ask to see haematologist at your warfarin clinic?
Thank you. INR is always up and down like a yo yo. It was also in Jan in Hospital. I’m pretty certain that my GP won’t refer me anywhere else. I am going to GP surgery next Thursday for another INR check plus, some more bloods, after nurse from Hospice said it sounded like I had anaemia and rang GP herself. I am pretty sure I have not had one of these blood tests your refer. No access to Haematologist from GP surgery. Never discussed Hughes Syndrome with anyone. Never heard of it till recently. Forgot to mention my previous blood test results this year have been all over ie. low platelets, haematocrit, etc.
Hi Splodge. Firstly I know it's confusing but don't panic. I also bleed from the gums, and I've been told it's due to a thinning of the gums. I don't know if it's a condition of APS, but it is "hey it's just a thing" with ME or Myalgic Encephalomyalitis and yes, it can help to cause anaemia. So might be an avenue for you to look down. But as you've found, don't expect much help from the doctors, other than treating the symptoms, speak with those will have already gone or still going thorough it.
Crikey I wish I had some advice! I thought I had pneumonia in Feb, I knew the pain well as I was hospitalised in 2003 with it. I thought I had it in Feb because it’s a pain you never forget. Somebody came out from my GP surgery and at one point suggested the possibility of a DVT which terrified me as I lost my mum to one.
As for the blood in your mouth I’ve never heard of such a thing and I’m shocked that you aren’t getting any medical help or diagnosis. Surely that can’t be left unanswered? I wish you lots of luck and hope you get answers somehow.
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