Would anyone have any advice my antiphospholipid is negative for a number of years and my haematologist recommended a number of years ago coming off warfarin, as she felt my TIA was related migraine ,at the time I was too nervous to stop the warfarin .My GP reviewed my notes and agreed I should stay on warfarin .I have a gut issue and my GP has not been great due to drug inter actions she refused to prescribe anything despite my warfarin clinic saying they would monitor me .Also my GP cant remember reviewing my notes with me .I am going to ask for my Warfarin to be reviewed i think ??? Finding this very stressful can APS go from positive to negative on warfarin ?and if you come off warfarin can it go positive ?
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charlie007
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I too am going for the full bloods today, following bridging, so off warfarin and injecting for 5 days, to check if my levels have changed. They tell me as. You get older and start the menopause that bloods do change. I too am really anxious about this, I take 12mg warfarin a day, and if they say its APS negative they will look at taking me off meds. Which would be amazing, but to me very scary. We have to just accept that they are the experts in their field. Good luck.
From my research and what my specialists say, indeed the prof who discovered the disease says, you don't recover from APS but many folk have had a misdiagnosis and are taken off the drugs.
Maybe I’m wrong but I thought that once you are on warfarin, the APS tests are inaccurate.I always quote the story of the twins that Prof Hughes tells of how one has positive test results the other negative. They both had the same symptoms so he treated both as if positive. Both responded to meds and were a lot better. It was concluded they both had APS despite blood results.
That story and many others proves that there is such a thing as Sero-Negative APS.
I’d do some research if I were you and attend your consultation armed with questions, and stories of those with different backgrounds like the twins. Good luck 💋 x
Hi, results can go from positive to negative or vice versa, it does not mean the disease has gone away. I hope you can have a word with your consultant and do highlight any symptoms you currently have. MaryF
You do need to have a Doctor who understands this illness and that we from time to time can have negative antibodies, but as long as we have got a diagnose of APS this illness will never go away.
It is very difficult even for a Specialist to give a correct diagnose between the autoimmun illnesses that go hand in hand (SLE, RA, Sjögrens, APS, Thyroidea etc) and have so much in common as to symptoms. But those Specialists who work with patients like us every day are more capable to give a correct diagnose and also treatment.
The antibodies have nothing to do with the Warfarin. Warfarin only makes your blood less thick. How much Warfarin you have to take to keep a certain INR in range are individual. That has also to do with greens, exercise etc etc.
Interesting post as the rheumatologist I consulted at Guys 5 years ago( where the Lupus etc clinic is now based) told me that I probably would not have been diagnosed with antiph. syndrome now. Twenty years ago you took warfarin after a clot, mine was small and then blood tests after 6 months. I insisted on attending the ST Thomas based clinic who advised haematologist etc locally. I was advised to take warfarin long term but I declined and eventually stopped low dose aspirin, statins etc on understanding that I would change if a dvt reoccurred. I tested negative quite soon after the first clot and have had no more clots but some autoimmune type problems which are largely under control through diet and some quite low grade "drugs". I keep my ear to the ground here but also in US etc and am considering low dose aspirin again after my second light bout with Covid and that increasing risk for stroke etc.
We are different persons and even APS is very individual. It has to do with what Doctor you have got, how many antibodies you are positive to and and in what titre and how severe symptoms you have got.
All my APS blood tests turned negative afterI went gluten free in 2004. Still, after having positive bloodwork for the preceding 3 years, and after suffering from many mini strokes, I was hyper-reluctant to come off warfarin. My doctors and I agreed to experiment. We would lower my INR to the lowerst point I would not shows symptoms. For me my target range is now 2-2.5. Though I can be symptom free to as low as1.7. And that is where I am now. Negative blood work and warfarin to a target of 2-2.5.
I would say don't stop. Based on my experience, I was in remission for a few years and just before Christmas I had another stroke.They said this time, warfarin for life, no coming off it.
The numbers definitely fluctuate.
(I was on plaquinel at the time of my last stroke, but wasn't very compliant!)
I’m on warfarin, and most of the time I’m positive, but only recently - about two months ago in fact- one of my antibodies went negative! ( I was thrilled!) ( the other one increased slightly. )
My rheumatologist told me to pay no attention to it at all… as they can and often do - for many patients- fluctuate.
About a week ago my hematologist agreed to trial me on fondaparinux injections because I have a very severe case of APS. ( refractory thrombosis.)
I had a tia and was diagnosed with Antiphospholid. I had looked up studies and found that Warfarin was not any better than aspirin in reducing risk, I have not checked any newer studies. My tests are also now negative and my doctor told me that Antiphospholid can come and go. At the time I was first diagnosed I was very stressed and continued to be for a long time. I only take an aspirin a day. Since then I have also been diagnosed with chronic ischemic small vessel disease. Also. don't ever assume someone is an expert, You have to also do as much research as you can.
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Finally got a diagnosis of Antiphospholipid syndrome.
positive then negative now waiting for testing
Referral
