INR 0.9 without Anticoag therapy

HI fellow Hughes Syndrome Ppl, I was diagnosed with APS after venous clots developed in my calf during the final weeks of my pregnancy. No history prior to this event but now with two consequtive and positive tests ACL-IgG moderate positive = 23.

The clots are now resolved and its been a few months - In your experience would you think i should be on Anti coag long term? My GP admitted that he knows little about the syndrome and has referred me to a Haematologist in perth Western Australia, but has not put me on any further Anticoagulant therapy as i had transient factors involved and my INR is 0.9 and he doesnt think i need to.

Also i have had persistent pain in the leg affected, aching, sore, stiff, genrally tender - is this typical of APS?

Appreciate your thoughts!

Thanks Bec

5 Replies

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  • Hi there, and a big welcome to you, I am glad you GP has referred you along to the haematologist, you do need more supervision with this, and you GP could if he/she is approachable - do some reading on this condition: Firstly, we have many papers on our HSF website which you could send to them to read, or just the link to the website indicating the useful content: hughes-syndrome.org/symptom... - and there is some expertise in Australia. Kate Hindle from HSF on here -KateH, will be able to clarify the whereabout of Dr Tim Godfrey: Who has helped others in Australia, having trained under Professor Hughes in London. I have found from my own experience, that half the battle is being diagnosed and referred and the other half is firmly and politely helping all medical staff around you in some sensible reading: I have in the past even purhased and delivered books to them all! Please keep in touch and let us know how it goes. Mary F x

  • Allele - welcome! Echo what Mary says and also just to add that anyone who is not on any Anticoagulation would have an INR of around 1.0 so your is normal given your not taking anything at the moment so don't worry about that.

    I too am pleased you are being referred and if you are at all worried at anytime you could try at least asking your GP about taking a baby aspirin until you get to see someone and the pain in your legs was particularly bad. Keep us updated to your progress. X

  • Yes, I take baby aspirin dispersible, 75 mg, on full stomach, morning and night as do my teenagers... it has made a huge difference to the amount of migraines I get! As it has with them also. Mary Fx

  • Hi Allele. Was diagnosed with Aps 10 years ago in Melbourne. I had two major clots running all the way up to my right knee. I tested positive to anticardiolipin and lupus antibodies. I was told I will be on warfarin for life and INR should be between 2-3. I am seeing a haemo in Perth as I have not been to a specialist for 8 yrs. So good luck to you

    Take Care

    Anne

  • Hi Anne, wow! I have an appointment to see Steven ward at Hollywood hosp. Who are you seeing?

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