hi all. Sorry been MIA. I am seeing Prof Hunt soon and as of late St Thomas's have been wanting to stop my warfarin as aps negative for quite a while now.
history - dvt in pregnancy 2002, weak + anticardiopilin afterwards
Treated with lmwh in all pregnancies
2014 - broke shoulder, unwell after, TIA. Then triple +ve off the scale.
started warfarin, Hydroxychloroquine, azathioprine for memory issues. Antibodies became negative (around 2019?)
It will be interesting to see what they do. I’ve always been told that if you’re diagnosed with APS it’s for life especially if you have had more than one clot. However it’s been concerning to see how many are being told to stop their warfarin recently. If you get to actually see Prof Hunt it will be really interesting to know HER views on this and if she keeps you onto something else. I know Prof Cohen wouldn’t!
Agree too, it’s odd as I too have APS, have had DVTs and a TIA. I take Hydroxy, but life juggling meant I refused warfarin, nightmare to get blood tests, and as I had to stop Rivoroxaban, due to TIA. I inject once a day with Fondaparinux. Am under Dr Karen Breen, at St Thomas’, who I believe works alongside Prof Hunt.
Would love too, to know what they say.
Good Luck 🍀
Hi, there seems to be a trend here?! I say the following if you are unhappy coming off your warfarin or not convinced its right path fir you. Listen and make up your own mind to what's right for you.
I would go prepared with your history and symptoms. Ask if all 3 tests are now negative? What research papers are supporting their views? What support and monitoring you will be given? And finally I would ask if I have further blood clot after removal of medication who would be accountable?
Please let us know how you get on?
Excellent points here, I agree with them all, I would insist on full monitoring if taking your off your Warfarin is going to be a option, but your voice must be heard in this decision, going in and out of positive/negative is not unusual, but none of us wish for mistakes with our care. Do write your medical history out in bullet points so that nothing is missed at your appointment and please let us know how you get on. MaryF
Me too! I went from positive to negative APS tests after I went gluten free. My docs and I have compromised on: stay on warfarin but aim for as low an INR as I can go without my numb-back-of-head-when-I -wake tell. That number is 1.3, which is almost not thinned at all! I have stayed in a low range ( 1.5-2.5) for over a year now and all is well.
I have been apl negative now for 4 years my hematologist originally would have let me come off warfarin if I chose. He has a few patients who did, one still off one’s antibody profile went positive again so put back on. However, in the end of 2021 , a study was released and presented at the American hematology conference stating the dangers of doing so and he now strongly suggests staying on warfarin. Here are his notes to my team of specialists on the matter and a link to the study. He no longer orders antibody tests on me but wants me to stay on warfarin indefinitely.
“With her antiphospholipid syndrome history and the seronegativity of her laboratory testing for this starting in late 2019, including her most recent antiphospholipid antibody testing from earlier in the year, I did have some new data to share, which was that at the most recent American Society of Hematology meeting a couple of weeks ago, I learned about an upcoming publication from an investigator (who presented a different abstract at a thrombosis session that I moderated at the meeting) reporting that the conversion of a previously positive lupus anticoagulant to negative does not mitigate long-term thrombosis risk, which was initially presented at the International Society on Thrombosis and Haemostasis meeting earlier in the year (Colling M et al, ISTH 2021 Congress;abstract OC 44.2). In my patient’s case, she has never had a positive lupus anticoagulant, but I wonder if we can extrapolate to her previously positive B2 glycoprotein antibody test and surmise that the negative conversion since late 2019 is unlikely to translate to any dampening of her thrombosis risk and that we probably do not need to keep checking her antiphospholipid antibody tests anymore. She is also not taking hydroxychloroquine, which I think is fine. I will plan to see her again in a year.”
Post of study my doctor cited, Colling M et al, ISTH 2021 Congress;abstract OC 44.2
My appointment at St Thomas'
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