Had a preterm labor with lots of clots, and now a blood clot in arm. Possible APS?

I have had a myriad of symptoms. In July I began going into preterm labor with my daughter at 32 weeks. When the doctor was performing the c section, I remember him saying "Wow, where did all these clots come from?" and I just kept passing them after that and they were huge. The baby was okay and in the NICU for 3 weeks. Now as of a month ago, I started to have what I think are small seizures when my eyes are exposed to light, especially LED lights and computer screens. I was put on Topamax. Worst. Drug. Ever. I ended up noticing my arm was hurting and I couldnt touch it or anyhting and it was found to have a blood clot that I was assured was harmless. I wonder if the topamax caused this or do you all think with what happened with my labor and delivery and seizure like episodes I should look into APS?

10 Replies

  • I should start by saying I have taken Topiramate (Topamax) for more years than I care to remember and as far as I know there is no link to clots and it is an excellent medication especially for migraine type headaches and of course if its being prescribed as an anti epileptic.

    As far as APS is concerned I would have thought that you would have shown other symptoms before but even so they would have done blood tests for the clots - did they? Did you have any of these tests for aCL, AL or anti B2 Glycoprotein 1? If not ask for all three.

    Im not an expert but sometimes people do have a clot after pregnancy but its nothing to do with APS so again this is something you should speak to your Gyny about.

    With all the hormone changes after delivery some people do have migraines so it is easy to put 2+2 together and make 5 but on the other hand dont dismiss it if you are worried. Speak with your Doctor and get tested.

    Let us know how you get on. x

  • Oh and I should add that with APS you have clots that are venus or arterial, not ones that you pass. Hope that helps.

  • Hi there, without jumping to any conclusions, I would look into this, your GP could run the tests which are not expensive to perform and also go into your medical history, you can see if anything from your medical history rings a bell also, at least you can then rule it out having lost nothing by carefully looking into things. Best of luck. Mary F x

  • Hello hun.

    Pre-term birth can occur for many reasons, but it can also occur due to Hughes (APS), as can seizures and clotting events. Where exactly is the clot in your arm? Did they tell you why they considered it harmless? I can only imagine it is not in a vein or artery as that would not be considered harmless!

    I think you should list your concerns and ask your doctor to run the tests. Also speak to your doctor about the fact that Topamax is not working for you. Please let us know how you get on. Delighted your baby home safe and well. Jane xxx

  • Hi

    I had severe pre-eclampsia at 24 weeks deteriorating till 32 weeks then an emergency c section and DIC which is also termed Catastrophic APS, widespread clotting and organ failure, so yes it's likely you had clots and my bloods didn't return to normal for some time, it takes a while for the body to clear out all the micro clots that develop with DIC so it effected me in a similar way to what you describe. My placenta was full of clots too. Scarrry stuff but you have your beautiful daughter to make up for it at least! My son survived and is a man now of 28 years old, how time passes!!

    Take care

  • Thank you for your kind words and advice and input. My neurologist doesnt seem to think that I have APS. He ran the test however and soon I will have the results back. The neurologist just said it was a superficial clot in the vein in the arm. He said it would likely dissolve, which I am hoping it has... Thanks I will let everyone know what my blood test yeilds.

  • Well, I called and checked the labs, I have not recieved the lupus anticuagulant results, but the lab tech says that my labs are normal for the antibodies. So I guess this means that APS is not what I am suffering from. It would be nice to have answers sometime, this is so frustrating. :(

  • Some of use are clinically diagnosed with Hughes Syndrome due to clinical events.. and have not passed an actual test, this is known as Seronegative Hughes, there is a paper on the HSF website regarding this, not wishing you to jump to any conclusions, but it is worth you looking at! Mary F x

  • Thanks, Mary. The reason why I thought I had Hughes was because I recently also had bloodwork done and my dsDNA was detected which is a marker for lupus (which doctors are telling me I still don't have because the titers were low.), but I know some of the cognitive issues that I have had along with seizure like activity can be a sign of hughes. I know many people have lupus and hughes or APS. I am just trying to find answers somewhere, I guess. Thanks for the advice, I will look into the paper on seronegative hughes, but I will not jump to any conclusions.

  • That is fine.. stay on here for some ongoing information and support, you are not the only one. Mary F x

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