Tested positive twice, then negative

Hi all

After having a DVT in my calf and two PE's at the age of 43 I tested positive twice for antiphospolipid antibodies, 6 weeks apart. My heamatologist at that point said I probably had APS, but because the second blood test was conducted 2 days inside the testing window decided to test again about 6 weeks later to de certain. The third test came back as a negative. The haematologist then suggested that I didn't have APS and asked me if I would like to try one of the newer anticoagulation drugs as I halso had Factor 5 Lieden (up to this point I was on warfarin - INR target range 2-3 or LMWH). I was asked to decide which one I wanted to try. After much thought I opted for APIXABAN at which point the consultant asked which dose I would like - 2.5mg or 5mg twice a day. Surely the haematologist should decide which is best?? I have now been taking apixaban (first 5mg, then 2.5mg) for 4 months. My symptoms still persist including painfull joints in my arms and legs, pains in my muscles like I've got dead arms/legs, bones which feel like they want to split apart, daily headaches, visual disturbances at times, difficulty in maintaining concentration, tiredness, stomach pains (this improved whilst on warfarin/heparin but now the stomach pains are back). Having read various articles about positive/negative blood results, I am concerned that if I do have APS, then I am on the wrong medication. I have asked my GP to refer me to an APS specialist in Cardiff, but he declined because he thought the local haematologist does a good job. I have now been referred to a neurologist and a rheumatologist (lord only knows when those appointments will come through!). Does anyone have any advice or guidance on the need to insist on seeing a APS specialist and my current use of apixaban please? I feel I am in need of having some form of diagnosis for my own sanity as I'm beginning to wonder if it's just all in my head. I'm sure my gp thinks I'm just a hypochondriac. Thanks very much.

3 Replies

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  • Hi, many of us have been in your position with that dreaded feeling of being misunderstood. Your Haematologist is on the right path, and you need to be aware that patients can go in and out of positive/negative testing. Regarding your joint pain, many do very well on Plaquenil for fatigue and also general pain regarding flares.

    Professor Hughes himself often uses the example of a set of identical twins, he has on his books, they have identical symptoms, one always tests positive, the other negative.

    However you need more testing. Firstly your levels of Iron, (ferritin), your B12 and your vitamin D levels must be looked at, plus a full thyroid panel, any of this being low is not uncommon especially if you already have the health problems you mention.

    I wonder if as your GP is unable to consider a more detailed referral perhaps some detailed reading material for your current consultant. If tactfully done, I have at times bought books by Professor Hughes, and then passed them on, saying what an interesting read they were! I can imagine being asked what dose of drug you would like must seem a little unusual!

    Some of us do get every test done, and then go to The London Lupus Centre, as a private self referral taking all the tests done, with us, in order to help get our NHS care back on track.

    MaryF

  • Please go to our Pinned Posts section which is to the right of this page or scroll to the bottom if on a mobile where you will find a document about the RAPS trial on Rivaroxaban which is the ONLY DOAC approved for Hughes patients at the moment. Please take that to your GP and explain that is why you need to be referred to a Hughes specialist and say you are entitled to a second opinion. Also in that same section is a list of specialists that you can find in your area. You can only take Rivaroxaban if you have had a Venus clot and needed an INR 2-3. Any higher or an arterial clot and you will have to stick with warfarin I'm afraid or LMW heparin.

    As for the tests well 2 days is neither here nor there and if he wanted to be that pedantic it wasn't 6 weeks apart it's 12! Frankly however I don't think in your case it makes two much difference if you have had 2 clots.

    You are right he's passing the buck asking you for your opinion and for that reason alone if I were me I'd be at my GP flapping that paper in front of them and insisting they make an urgent referral with someone else of your choosing and in the meantime get you back on warfarin safely by bridging if need be. As Mary says if you are worried this is all going to take too long and can afford it then the private route is an option open to you for peace of mind.

  • I would ask for more tests. Antibody tests can be tricky. My levels are always high, but I have had huge variations in one test. I had an 85 positive and then a 75 positive from the same blood draw and same test date. It also depends on if your samples were collected promptly and tested promptly as MaryF always says. Sometimes when the samples hang around for too long, you can get bad results. You had two positive tests. You should be tested again. I didn't have to struggle too much with my diagnosis as my first event almost took my life. So, they were going to keep me on Warfarin for life regardless of my test results. We are kind of the same in the respects that I also tested positive for Factor 2. You have tested positive for Factor 5. They are almost the same. So you already have one genetic blood clotting disorder like I do. This makes you susceptible to getting APS which is considered an acquired blood clotting disorder. One of the risk factors for getting APS is having a genetic clotting disorder. I have read this somewhere in the literature. I don't see why they won't treat you with Warfarin. If you were doing good on Warfarin, then they should leave you on it. My Hematologist said that she has patients who fail Warfarin and those who fail on the newer meds. I wanted to switch to Xarelto; and she sold me that since I have not had another event while on Warfarin to not rock the boat. I hope you can see a specialist soon who will also test you for the Beta Glycoprotein antibodies, as a small subset of APS patients only test positive for those antibodies; and not the Cardioliphin antibodies. I'm one of those who would have not been diagnosed had they only ran an LA test and a Cardioliphin test. I'm a true zebra. At least you have one confirmed clotting disorder. They won't try and take you off of all blood thinners. That is half the battle right there. Hang in there. You will find a good doctor to treat you.

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