Antiphospholipid syndrome

For the last 15 years I have been doing my own home testing with a coagu monitor I bought from roche diagnostics.I have been

Increasing my tablets to have an INR between 2 -3.Today at the warafin clinic I was told I should not have been doing self testing as I have the antiphospholipid syndrome and Roche Diagnostics will not stand over the test results as they are not accurate.I am upset as doing home monitoring has allowed me a certain amount of freedom.This is the first time I have been linked in with the warafin clinic.My consultant had given the okay to go ahead with the testing in the first place.Just wondering has anyone that has the antiphospholipid syndrome experienced any thing similar or if they are doing home testing or have any advice?

29 Replies

  • Hi Charlie

    I have Antiphospholipid syndrome, Hughes syndrome both the same their is a Hughes syndrome site on healthunlocked not sure if you have seen it.

    Los of people on their self test as I do to, although the machines are expensive I believe they have been a life saver In my case.

    have a look on that site for loads more help

    Good luck

  • Thanks so much ,I will look at the site.

  • Re warfarin, I too have APL syndrome which is how I was diagnosed with lupus.I find my INR changes unexpectedly, particularly if unwell. I have an INR as directed probably every 2/3 weeks and after emailing Prof Hughes clinic in London, keep it at 3.5. I had been having probably, little blood clots pass through my brain before at 2.3 INR level.

    I'm happier to be monitored.

    I live in Melbourne , Australia .

  • Thanks so much for you reply,I 'm just wondering since you have had little clots do you suffer from migraine?

  • I certainly do have migraines, serosa covers the brain so a flare can mean serositis of the brain which is felt as a migraine. I think I have less headaches though since the increase in the INR. It's anecdotal but we know own body and disease better than doctors, in many matters, I believe.

  • I really appreciate your reply,I think I will contact Dr Hughes

  • I was recently diagnosed with antiphospholipid syndrome too :( I had no idea you could test yourself! I am only on aspirin though but the main concern is if I become pregnant, I have been told I will need to inject myself every day which is a bit scary!

  • I am glad to say that even though,I have Lupus ,APS etc I have had two healthy children.So I just want to reassure you .Fatigue was the main problem.

    Yes you can test yourself but it has to be as far as I know with the support of your consultant.

  • Thank you so much :) did you have to inject yourself during your pregnancies? And did it cause any problems? Xxxx

  • No I did'nt have to inject myself,but had to have regular fetal. heart monitoring,which was reassuring.First baby was a normal delivery and lupus flared weeks after and was exhausted more or less for a full year,second baby was a section and much better and no fatigue,so much better experience

  • Thank you so much :) xx

  • Self testing is just for people on Warfarin, it is to see if you are on the correct dose.

    I had Clexane injections during pregnancy, the treatment is now Asprin and Clexane, needle is tiny no problem, but everyone's different

    Please see Hughes syndrome Web site on here

  • Thanks hun x didn't realise it was just for people on warfarin xx

  • Many thanks the Hughes syndrome web is excellent

  • Sorry I just took it for granted you knew about warafin,I should have mentioned it in my reply!

  • Dear Charlie,

    My insurance company would pay in full for me to have the INR testing machine. However, my PCP will never agree. He wants it to be done only in a lab (Labcorp) or at my hematologist's office when I go there once a month. The upside of having it done in the hematologist's office is that they use some of the blood they draw for the CBC and I have all the results in 4 minutes. They send the rest of the tubes out - and that's the downside. It takes Labcorp forever to email me the rest results. In the past, If I had the labs done on Tuesday, I would have results by Friday evening. My hematologist is only in two days a week - Monday and Tuesday - and sometimes he calls if something other than the usual "lows" take place. It's sressful. My INR has been 2.8 for the past few months. My hematologist would like it a little lower because I also have ITP - platelet disease. I eat only foods that are allowed on the Warafarin diet, but I am tempted to cheat sometimes! Something like a real salad which I miss a lot!

  • Thanks for your reply,What bothers me most is all the time you have to spend waiting in hospital for bloods to be taken,traveling to and fro and half the day is gone,I know its a bit selfish but I dont want to live my life around a hospital,but I dont want to take risks either.I probably. sound confused!

  • Charlie - My hematologist does a CBC and an INR and the results are in practically immediately. You need to find a good hematologist in your area. In the US, all hematologists have laboraties and techs that draw the blood and get you results in 4 minutes. The more "sophisticated" blood work is sent to a lab, where the doctors get the results in max 2 days. I get them by email, but it takes days to get to me. I usually ask my hematology staff to fax me the test results. I am curious about the MG OX - last month, I had 5 more abnormals - iron, sodium, chloride, calcium and carbon dioxide. Those were never low before, so I reeally would like to know if the MAG OX helped. I won't find out until Monday. I read the post below and that's proabably why my PCP won't let me get the INR testing machine - they are probably not always accurate.

  • I have APS and wouldn't be without my machine. I know they say if the INR is particularly high the machines may not be totally accurate in APS I still believe they are accurate enough and mine has been a lifesaver on numerous occasions. In fact I had a vein test a few months ago and it came back totally different to the machine test. I went to the hospital to get my machine checked and it turned out the machine was accurate and the vein test had been incorrect!!!!

  • Thanks sally

  • I have antiphospholipid too and have a self testing machine. I wouldn't be without it. I think some warfarin clinics are not comfortable with self testing whereas consultants approve them. Can your clinic not do a 'calibration' of your machine? I went to my clinic (at the hospital) with my machine. They had their own bigger version of the machine. I carried out a test on my machine to obtain a reading. I then used their machine, which they had already tested against venous samples in previous patients so they were happy with its accuracy. This determined whether my machine was in line with their machine. It was. I then had to have a venous sample at the hospital the same day as soon after the machine tests as possible ( they have a walk in service). All three of these results were the same. They therefore approved my self testing. I self test and phone in the results. Every 6 months I have to go through the same process again to check my machine again. Hope this helps. An INR of 2 - 3 seems on the low side for antiphospholipid syndrome. Good luck

  • Many thanks for your reply,it has been very helpful,I think I need to talk to my consultant.

  • I have been told that the home testing machines don't give the correct reading that's why people with APS need to be tested through blood tests not with a finger prick machine, that's how mine has been done for many years.

  • Many thanks

  • i have aps,sale and discoid lupus,raynaurds,sclerederma,and mixed connective tissue disease.i have been self testing for nearly a year,and its given me a bit of my life back!i was having to go to the drs surgery 3 times a week for testing!now i still test 2-3 times wkly,but at home and phone the results through,then dr rings after inr is 3.5-4.5,and is difficult to keep stable.had recent hop stay,and there readings where .8 lower than mine,however,on checking my machine with my drs using the same drop of blood for both machines,and also sending a vein sample for lab testing,there was only a .1 discrepancy.i wouldn't be without my machine now.

  • Can I ask where you got your machine from?My daughter needs one

  • I bought it with Roche diagnostics , I dont think you have to buy it in the UK.In Ireland you also have to buy testing sticks they cost €230 for 48 sticks,but it gives greater sense of control over your condition.I hope this helps.

  • hello! i was wondering if any of you has myalgies?a friend of mine is diagnosed with Antiphospholipid syndrome and she is suffering from myalgies.if any of you has something helpful it would be nice.

  • I often get muscle pain ,lifting light things hairdryer etc,I take anti inflammatory medication.I am not sure if this is the same as your friend!

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