Self testing : I notice quite a few... - Hughes Syndrome -...

Hughes Syndrome - APS Support

9,528 members9,639 posts

Self testing

dwheeler
dwheeler

I notice quite a few people on here do self testing. I was diagnosed with APS and started on Coumidin. Once I was stabalized betw. 2-3, they said to go to clinic to have the finger prick instead of the lab for a blood draw. When I inquired about purchasing the machine to test myself, I was told no you can't do that, you have APS. So then of course I asked why they were sending me to clinic for finger prick instead of lab, and they said I was given wrong instructions. So when I was due for next testing I did both, finger prick was 2.5 and blood draw was only 1.9. Of course I would love to self test as I will be in Australia for 6 weeks in a few months. Any advice from you all is appreciated. thanks

16 Replies
oldestnewest

you would have a problem as i if you are LA positive , the manufactures won't stand behind their machines results.

dwheeler
dwheeler in reply to jetjetjet

The test I had was for the Lupus Anticoagulant. Tested positive both tests, 12 weeks apart, I don't know if there is a quantitative number given with this test. I see there are 2 other tests that are done, but they did not use the other tests on me. I'm a bit confused, so not eveyone that is diagonosed with APS has the lupus anticoagulant antibody?

Yllek
Yllek in reply to dwheeler

I'm LA positive as well.

Yllek
Yllek in reply to jetjetjet

I'm la positive and still self test.

thank you for the information.

Hi there!

I have APS and I have a meter. I was eligible for it through my insurance company after 90 days on warfarin...I counted every single day! I was sent my Roche CoaguChek XS meter from a diagnostic company that it is leased through. The test strips are about 1/4 of an inch wide. The meter can be very testy. I actually made a video (that I would be happy to send you) when I learned how to test on my own. Because I go through my insurance company, they diagnostic company is pretty tight on my testing supplies (very challenging topic considering my insurance company says that I have no limit on how many tests I can do). If you are doing this on your own, eBay is a great place to order supplies. My insurance company (BCBS) told me that you can rent from Roche directly.

I would be completely happy to help in anyway I can.

Abby in Michigan

dwheeler
dwheeler in reply to AbbyTay

thank you Abby. My insurance is telling me I have to already be on Medicare to get a machine, and the fact the I have APS disqualifies me. I am learning from this site and others that those with Lupus anticoagulant antibody do not test correctly on the machine. Do you have the antibody?

you can have APS with out LA-- the names are confusing-- I am a triple positive - i have Beta2- LA- Anti Cardio

I am also triple positive, so have LA. Initially I had inr testing via my GP who used a coaguchek. Had troubles staying in range. Switched to blood testing at hospital. Later tried self testing. Much better for me. The machine consistently reads 0.5 under. So I aim for results 4-4,5 and I feel pretty good on it.

My consultant is Beverley hunt. She is very positive about self testing even with LA, subject to testing in tandem to confirm that the results are consistent.

MaryF
MaryFAdministrator in reply to Fusch

Good advice, and easy for others to make sense of. MaryF

I was diagnosed with APS nearly twenty years ago , after suffering DVT's and a PE. I' ve been self testing for fifteen years , supplemented with finger prick tests every three months at my doctors surgery. My therapeutic INR range is the same as yours and I've never had any problems.

Hi dweeler and welcome to our friendly site for Hughes Syndrome!

First of all I would like to tell you that I love your photo!

Like Yllek, jetjetjet and Fusch and yourself, I also have Lupus Anticoagulant.

You say you have tested positive twice on that antibody (Lupus Anticoagulant), which they test with two other antibodies (Cardiolipin and Beta2Glycoprotenin1), to diagnose Hughes Syndrome. If one of the three is positive twice within 12 weeks apart you have Hughes Syndrome. It is enough to have only Lupus Anticoagulant postive to have a diagnose.

When you are later put on Coumadin (Warfarin) you can not do the Lupus Anticoagulant-test once more as it will give a false reading. The other two bloodtests (Cardiolipin and Beta2Glycoprotein1) you can do as many times you wish. They can later on be negative as many members here have sero-negative antibody-tests from time to time. They may go up and down. The titres also may go up and down.

As Yllek says she has a discrepancy (I have that too) between the fingerpricktest at the CoaguChek XS and the veintest at a lab.

As you noticed yourself you had a higher reading on the fingerpricktest (INR 2.5) than on the veintest (INR 1.9). Most certainly it is because you have Lupus Anticoagulant and some say we can not use a CoaguChek XS and take fingerprick-tests at home.

Certainly we can, but we must do a lot of DOUBLETESTS first to see if the discrepence is the same between the two every time. It is much more difficult to selftest when we are Lupus Anticoagulant!

Here in Sweden I did doubletests within a couple of hours for half a year to know that the discrepence was the same all the time. I have usually a difference of an INR of 0,8 - 1,0 and that is the number I have to withdraw to get the correct reading which is in the vein.

Hope you understand what I tried to explain. Difficult stuff! Please stay with us though!

Best wishes from Kerstin in Stockholm

dwheeler
dwheeler in reply to Lure2

thankyou so much, cleared up alot for me.

Only some manufacturers support their machines for APS patients, Roche (Coaguchek) is one - not sure if that is worldwide policy or just for the uk.

Lupus Anticoagulant (which I have) can give false high readings on the machines, but if the difference is stable you can still self test. You need several months of testing fingerprick and venous samples done at the same time for comparison, and the difference should be stable, before starting to self test. You also need the support of your Drs and warfarin clinic.

It is possible, even with LA+ve, but you need your Drs on side and you may need to pay for the machine and test strips yourself.

Lure2
Lure2 in reply to Ray46

Well said!

It is for Sweden anyway. I have CoaguChek XS and selftest since early 2012.

By the way what is your difference between the two tests?

Kerstin

Thank you all for the information. I feel much more equipped for when I see the Dr. at the end of March. Learned a great deal from your posts. I was scheduled for a 3rd Lupus anticoagulent test prior to this visit and now I know that should not be the test since I am on warfarin. I will be requesting do do vein and finger prick to see if I can establish a consistent reading, so hopefully self testing will be in my future. Sorry about the giant picture. it said add a pic and I thought it would be in the small smiling face like others and I couldn't figure out how to get rid of it, but thanks to Kerstin for the compliment. (that's my 3rd daughters middle name, I love it!)

Is anyone on here in the San Diego area?

You may also like...