Prayers and hope (for self testing) - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Prayers and hope (for self testing)


I'm starting the process of getting my docs to prescribe self testing for me. I know this is going to be a long process, both on my education and getting health insurance to cover it (they've already told me the Dx code for APS isn't approval for the machine).

I'm open to any suggestions and advise y'all offer for any part of this process.

I've also been referred to a stroke neurologist, who thinks a lot of my symptoms ands "episodes/spells" may be migraine related.... more tests scheduled over the next month or so.

16 Replies

Hi Mylafont

I'm glad you decided to self-test. The trainer came to my house and spent about an hour and a half and taught me how to do it. Then she had me do 4 separate tests, one on each finger to make sure I knew what to do. Then I was on my own. Sometimes I get it right away, but other times I don't draw enough blood and have to use another strip and try again. At the beginning, you may have wasted strips. She gave me a log book to enter my results--when I have a successful result, I call the company (Alere is the company who brought the machine) with the results and they fax them to my APS doctor. Then his office calls me and goes over results with me. My machine is

CoagU Chek Xs. I don't use the pen--I use lancets--A good kind of lancet is called "Safety Lancets" by a company called Boca Medical Products.

After a while, you get so used to doing it--I test once a week.

They'll show you different ways to get the blood flowing in your fingers so that you can be successful with it. It's really quite simple once you get used to it.

Good luck.

Let's hear how you make out with it.

spider7 in reply to mozelle


did you buy the machine your self or did the hospital provide it for you . I would like to self test but can not aford the machine I have to go to the hospital every Tuesday and it is a pain,

Hi Mylafont,

I went to my rheumy with the express intention of going on a self tester. I suffer with APS and SLe .

My consultant has refused point blank to let me. He said that in my case it wouldnt be accurate enough and can be as much as .5 out and unfortunately that is too much for me.

Just really really check. He stated that he had a tester in the hospital and used to use it until it was found to be so inaccurate.

Just go along with your consultants advice.

Also the migraines yep great. I have gone blind with them, paralised with them etc. It was found I had blood clots - I had been treated for 30 years for migraines. Dont know why im still here really terrible misdiagnosis.

Never mind got it straight now and hopefully I can progress. Im on warfarin and ive not had a severe MIGRAINE since.

Regards Diane

mylafont in reply to diane1428

I am LA positive and plan to parallel test with my lab until we are confident the difference between the two tests are consistent.

Best wishes, I've been self testing now for nearly 5 years. All will go well.

Hi mylafon,

I've been self testing now for 7 years and am a great promoter for self testing where ever it is possible, safe and hopefully supported by your medical team. It's gives enormous freedom for travel, less time spent in clinics and will let you share in the responsibility of managing your Hughes. I test once a week, perhaps twice if my INR seems sufficiently off target.One bit of advice I was told at the beginning using my Coaguchek Xs: Every time you begin a new batch of strips (which I get in packets of 48) you should cross check your machine readings with a venous sample in clinic to 3 weeks in a row to establish the differential between the two reading. There is always a small difference, and it does vary between batches of strips, but once you know what it is you interpret your reading more accurately. All the best, I'd be glad to answer any more questions should they come up.

Birdman in London

I do my self testing when I am in London visiting my children. Otherwise back home I get done by the lab. They email my result . The hospital where I had my open heart surgery. I do the the test for my INR.

It was no doubt a big effort to know. I was wasting lots of strips . But I seem to have learnt in this trip to London. If you are a right handed use the finger on the right hand . I try to make a comfortable sitting keeping the machine just in front and close to me. It does not create an error from the right finger for me. I do not touch the machine . Instead pour the blood on the strip.

I need to do after two weeks. I am relieved I am not wasting strips this time. Also very pleased that my worry is over.

Good luck to you.

Lure2 in reply to Rukho

Do you test every two weeks only. Are you Lupus Anticoagulant? What therapeutic INR-level have your APS-Specialist put you on?

I ask as I have heard that people with APS test at least twice a week here in Sweden. I test every second day and my INR is 3.2 - 3.8 decided by my Hematologist.

Best wishes from Kerstin in Stockholm

minnime63 in reply to Lure2

Kerstin, I test at the clinic every 3 weeks! Budget cuts, I think,here in the UK. My INR is still far from stable and still only at 2.5. I asked doc about self testing (we have to buy our own machines but in some regions the strips are supplied on the NHS). She is still looking into it for me one month on!

That sounds good. Good luck with it.


I tried self testing years ago. It unfortunately did not work out. If you pursue it, bring it to your doctor's office to test along side their lab results to make sure it's accurate. When I did that, my tester machine was wildly, drastically different than the lab INR. Turns out that if you have the Lupus Anticoagulant like I do, it doesn't work with the -reagent that the machine uses.

mylafont in reply to Holley

I'm am LA Positive and plan to parallel test hoping the difference in the two methods are at least consistent even though different.

Holley in reply to mylafont

I wish you luck. I really put a lot of my hopes on that machine. My hematologist spent a lot of time on the phone with the manufacturers. The machine gave me readings like 6.0 whereas the lab gave me an INR of 2.4.

mylafont in reply to Holley

That's a difference of +3.6. were your differences always 'plus' and always around 3 points?

No, my results were always all over the place. As much as I wanted the convenience of self testing, I wasn't willing to put my life on the line. Which machine are you looking to get? I would have a conversation with your doc & the manufacturer. Ask about what re-agent they use and the Lupus Anticoagulant.

mylafont in reply to Holley

I'll probably use the Roche coagucheck. Roche said it will be different from the lab, but should be consistent. Implant to parallel test until I'm comfortable with the differences. Roche told me I only pay for the service, but not the machine and that I can opt out anytime.

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