Newby currently being investigated for APS

My recent history is that I was diagnosed with cutaneous follicle non hodgkins lymphoma last October. I had to have a full body CT to check if disease was anywhere else. In doing so they discovered i had a sizable clot in my lung. i am now on clexane for 6 months. At the time i was tested for APS and it showed borderline lupus anticoagulant. i have got to be retested in March I suppose to confirm if I have APS. I have been doing some research online and found out Dr Hughes said one of the symptoms with this condition is teenage migraines which I suffered from badly and also fractured metatarsals. I also had a fractured metatarsal in 2005. it occurred just walking in my lounge! After 2 days of having the plaster cast I developed a dvt behind my knee. I had a positive lupus anticoagulant then. They then tested me 6 weeks later and it was normal, so no further action was taken and had no follow ups.

After I am retested in March I am due to see consultant in June to see whether they will decide if I need warfren going forward. It certainly looks that way to me. I am quite scared with the prospect of being on warfren but also scared of what might happen if I am not anticoagulated. Feeling a bit in limbo at the moment with no actual diagnosis . Am bit worried if lupus anticoagulant is normal in march they may dismiss me again.

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  • Hello and welcome. You are one of these people who non specialists of Hughes Syndrome could find many ways of using the diagnostic criteria for this condition in its strictest terms and as you say, miss the biggest risk of all.

    For a start you have been diagnosed with a cancer which unfortunately cancers seem to carry higher risks of clots, not being knowledgable on this I'm not sure if this is the disease or the treatment. Then you have the issue of antibodies that have to be tested twice and should be positive on both occasions. Some will also insist on repeatedly testing and insisting on saying they have to be positive at high levels. Then there will be those that will say that the borderline positives are only due to infections or other inflammatory processes and just ignore the patients whole medical history in favour of the criteria at all costs (afraid of being sued) or concentrate on the latest medical problem forgetting what the underlying issues might be and forgetting to also treat them. It would be a bit stupid to cure someone of cancer only for them to then have a stroke but I suppose they would reason that was the unfortunate cause of the treatment rather than them not treating what was also wrong with the patient!

    I'd find an understanding Hughes specialist who is willing to WORK WITH your cancer specialist, and I'd do it sooner rather than later so you are not under additional stress.

    Good luck and keep us updated. X

  • Hi, Did you test for the other two antibodies tested for APS? Kardiolipinantibodies and Beta-2-Glycoprotein 1? If so - were they positive or negative?

    Best wishes from Kerstin in Stockholm

  • I did have all 3 blood tests done in December and wasn't actually told by the haematologist the results but just given an appointment to see one of his colleagues in June to assess me again after my course of cleanse is due to finish after the PE. I then had an appointment in January to see oncologist for check up after radiotherapy and I asked then about the results of the blood tests. As its not her speciality she wasn't too confident with interpreting the results so went off to speak to the haematogist that I had seen previously. She read off the screen that lupus anticoagulant was moderately high and the haematogist wants me to have a re test in March. I didn't think to ask at the time what the results were for the other two tests. When I went to my doctors recently she printed the letter off that the oncologist had sent to her and it said the lupus anticoagulant was borderline so I can only assume that the other two tests were negative.

    When I go back in March to see oncologist after my retest for APS I will ask the results for all 3 blood tests. The annoying thing is I have to wait till June to see the actual haematologist which specialises in APS.

  • Hi, and welcome, sorry you have so much going on. Can you tell me where you are located, as we do have a list of doctors who understand how to manage Hughes Syndrome/APS. You clearly need some more investigations and help and by somebody with full working knowledge of this disease. Lots of us have more than one thing going on. It is not all about the tests, you clearly have a very revealing medical history. Do write it all out in bullet points, including past and current symptoms. You will need to push for a referral to the right person, it is not only in your interest but also the GP who is often your first port of call. MaryF

  • I can only agree with what APsnotFab and MaryF have said. They are very experienced and if I were you I would look for a Doctor who really can cooperate and also knows APS exstremely well. I know how important it is.

    Best of Luck and stay with us and please also tell us how it goes for you.

    Kerstin

  • Hi and welcome

    My colleagues have already given you some great advice.

    Please let us know how you get on.

    Dave

  • Thank you all for your replies. I will certainly go to the appointment in June with all my medical history written down so i don't forget anything and so they can take everything into account. On my appointment letter it says I will see one of two haematologists. One of the names is actually listed on this site so I hope I get to see her. I live in Essex in the UK. Is there a chance that pre eclampsia has anything to do with APS as I also had that with my first child 33 years ago!

    Thank you for the surport everyone. It is nice to be able to ask questions to people who actually have the condition. I will keep you updated.

  • Hi I just got back ftom my follow up oncology appoint where I asked about my blood results from my re test for APS I had 2 weeks ago. He said the lupus anticoagulant is still slightly raised at 12. It was 11 last time. Dont really understand what is the normal range? Said it may be because of infection etc etc but am not convinced. Still nervous about whether they will keep me on anticoagulants or not in June. I obviously would prefer not to continue on them but not if it means i will be at risk bearing in mind I had a sizeable P.E. in Nov 2016 and a previous Dvt in 2005 when I was tested for Hughes and had one lupus anticoagulant positive reading.

  • Hi just got back from seeing the APS consultant. She is now saying my first LA test was slightly positive but second was negative. She is now doing more in depth blood tests to make sure. As my PE last year was spontaneous without a cause then she thinks it's best anyway for me to stay on anticoagulants for life, as I have a 1 in 5 chance of getting another clot, so providing my CT scan on Wednesday is clear of lymphoma then I will change to warfarin from clexane in about a months time. i am pleased with the result as I was worried they would take me off anticoagulants without a definitive diagnosis.

  • Hi, reading through your post re reference to migrains, pre-eclampsia and pe -it certainly all links to APS.

    I'm really glad they are keeping you on anticoagulants, I bet your so relieved.

    Good luck for Wednesday and hopefully this terrible period of bad health will be behind you x

  • Thankyou. Yes I hope so too. Getting fed up with constant worrying of my two illnesses but guess there are others worse off. . I was very relieved as I think I would have been so anxious about a clot forming. I know I will be anxious changing to warfarin as it scares me but will just have to go with the flow. Dreading CT on Wednesday as when they put the dye in it makes my heart race.

  • I love your positive attitude - I didnt get on with warfarin, I was only on it for 3 mths and they put me back on clexane, others on here will give you advice. Just remember if you eat lots of greens, to make sure you eat the same quantity every day. Undestandable to be scared, but it will mostly be 'fear of unknown' Im sure once you get your head around it you will feel more reasurred.

    Mention to the radiographer that the dye makes your heart race, they may give you an explanation?

  • I am actually not a very positive person but do try to be. I will have to read up all about warfarin. I will need to know all the dos and don'ts and will definitely ask for surport on here if I need it. She said if I don't get on with it then there are other tablets to try. I didn't think they liked people to be on clexane for too long? I hate my husband injecting me every day as its painful now but at least I don't get any side effects with it.

  • Hi, I took clexane for over 10 years, originally my husband did the injection each day, then I got fed up asking and waiting, so did it myself. Much better, surprising didnt hurt so much.

    Try the warfarin, it will give you a lot of understanding, keep an open mind and if that fails you, yes there are other drugs now you can try.

    It sounds like you have a good doctor advising and keeping an eye on you.

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