I was diagnosed with APS a year ago when my anticardiolipin antibody levels were 89 - which they said was very high. I have been on asprin for nearly 1 yr -just been tested again and the levels are 109!!?. I am so confused - the asprin thins my blood and if anything I thought that the the levels would be very low??
My doctor dosnt know that much about it so hoping someone could fill me in on why this might be the case?
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apsgirl
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I think that your anticardiolipin levels can change. In my case, when I was diagnosed I had arround 180. After that, I have had more than 200 sometimes and less than 180 several months later. When there was no doubt with the diagnose, my doctor stopped doing more anticardiolipin tests. He says that changes are not very relevant (except a very very big change)
Hi there, these results will probably ebb and flow in the tests done, and to be clear, aspirin makes the platelets slippery rather than thinning the blood as an anticoagulant does. Do you have a rheumatologist or haematolgist helping and advising on your care? They would be a good starting point regarding answering questions and general information for you. Mary F x
Hi thanks for all your responses that helps. I am not seeing anyone about APS as it was diagnosed during testing for the cause of recurrent miscarriage last yr and my doctor just said to mention it to the fertility clinic next time I go. Is very frustrating not seeing someone about it! Interesting about the vitamin d because I was told as well that my vitamin d was very low.
Thanks again for your help, it's very much appreciated ??
If you have been diagnosed with APS and have had a miscarriage you DEFINITELY need to see a specialist skilled in APS. Not just 'any old' rheumatologist, either, someone who specialises in APS. Professor Graham Hughes at the London Lupus Clinic is la creme de la creme. But the Hughes Syndrome Foundation website can help you with further information and appropriate clinicians.
My very amateur suspicion is that if your aCL levels are increasing then aspirin is an inadequate treatment and you need something more targeted and stronger.
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