Thank you and help

First of all I want to say thank you for all the invaluable information, help and advice you give.

Secondly I need your advice. I posted some time ago when my partner had positive test number 1 and we were waiting on the second test. He has been ill again recently and the hospital not sure what's going on? Anyway long story short his INR has dropped to 1.4. I contacted hospital to get rest of test 2 and B2GP1. So in summary test 1 positive, B2GP1 positive and test 2 positive but antibody present in the average to low range, not sure what that means. The doctor has said they are not sure if he has APS. He's also had a major clotting incident. What else do they need to do before a diagnosis is confirmed. This is the haematology department. I am at a loss? The APS specialist is on long term leave. My parents appointment is mid April to discuss results so I will be going with him (armed). In the meantime I think we have persuaded the docs to keep his dosage high to prevent the risk of clots. I'm a very laid back person but right now I am really angry and frustrated.

9 Replies

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  • You are right to be vigilant, and a shame the Hughes Syndrome/APS specialist is away, do you have the funds to take him as a one off appointment, (loaded up with all the test results you can get your hands on, as these are what add up). For an emergency appointment at London Bridge? So at least this can be adequately guided until the specialist gets back, or to see another person privately in the area? Some of us have to do this from time to time, let me know if this is a good idea and I will endeavour to help, if you remind me of your area again. MaryF

  • Hi Mary, thank you for this and believe me I have London on my radar. I will see what is said at his next appointment mid April and take it from there, it may be the specialist will be back then. I am a bit more calm now. In fairness they did at least consider APS and he wasn't ruling it out, just said not sure. The main thing is we have at least persuaded the doc that it's important than INR levels are kept high and within range.

  • Thank you Dave

  • Hi

    I agree with my colleague, Mary.

    The clinical symptoms need to be looked at, as well as the test results, especially if he has had clotting incidents.

    I went to London Bridge, not long after I was diagnosed, and I have never regretted that decision. I have also been back there on several occasions since, when I have had issues that required their expertise.

    Dave

  • A sec on opinion with a Hughes Specialist is a good thing, I also had to do it and it saved my life, because like you I had antibodies that did not behave. Unfortunately many Doctors especially Hemo's are worried about bleeding and forget that if the blood is too thick then the priority is to get it thinner so it does not clot. Also its sticky so sometimes its not just warfarin that might be needed but an anti platelet too. Specialist who are seeing people with this disease can tell the difference and make finer judgements than Dr's who are only seeing one or two cases a year. We all react to this disease differently therefore people who see lots of cases have more experience to draw on. Keep in touch with us and let us know how things are going.

  • I will, for sure. Thank you

  • I wonder what therapeutic level the Doctor has put him on? That is exstremely important if he has got another clotting incident that he stays steady at a rather high level of INR to prevent further clots, PEs and DVTs when his ordinary Doctor is on leave.

    Also get vein-tests at the lab rather OFTEN NOW when the Doctors are not sure how to treat him. As long as he is properly anticoagulated you both can feell rather secure!

    I selftest in Stockholm with an INR around 4.0 at what level i fell ok. My Specialist in Hematology wants me at that level also.

    Best wishes from Kerstin in Stockholm

  • Hiya his range is 2.5 his blood today was 2.4 and guess what his GP has told him to decrease his warfarin dose from 8mg to 6mg. I have told him to take 8 and contact GP tomorrow. He can explain that haematologist has suggested important to keep him at required level.

  • I like your decision to stay at 8 mg as he should NOT decrease the Warfarin at all if he has only 2.4 in INR. Make notes. Do not eat green vegetables like brusselsprouts and spenach and broccoli during these days when the Specialist is on vacation. They will lower his INR.

    2 mg (8mg to 6 mg) is a big change and would probably send the INR down to 1.5 in 2 - 3 days if he was at an INR of 2.4 on 8 mg Warfarin today.

    Try to take veintests often.

    Best wishes from Kerstin in Stockholm

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