Antiphospholipid Antibody Syndrome (APS) - SAY NO to Home INR and Finger Stick Machines!!

Brand of Machine: Roche CoaguChek S™
Diagnosis: SNAPS
Experience: After much convincing from other APS patients to get this particular machine, I got it. My insurance company refused to pay for it – and since I was told it was basically the next best thing to sliced bread – I paid for it out of my own money….close to $2000USD.

I did many comparisons with the machine before I and my doctor would accept the machine’s numbers. Things were working fine. The periodic comparisons were fine. Almost a year went by with no real problems or at least nothing that caught my attention. However, it was during that time, others who had problems with this machine came to me and gave me in-house documents regarding this particular machine. I was never told that this machine has a standard of deviation of 20% +/-. I also found out this particular machine has problems with APS patients.

All the sudden I started having problems. My INR was not matching my symptoms. Well, both my doctor and I assumed my machine was reading right and we would correct the dose. We played this game for a few months. I suspected a problem but would check family members who aren’t on Coumadin® and their INR read right. The controls were fine. It wasn’t until I had another full blown TIA that I realized something was seriously wrong - only this time my machine read 7.0. I checked it again, 7.8. I thought this couldn’t be right; my INR was 2.6 the day before. I checked it again, 7.2. Ran all the controls again – both liquid and electronic. Those all read fine. Of course, I got freaked and thought this was a bleed. Went to the ER and my INR was really 4.8. Still having the TIA but that machine was off, really off. I called the company. They said their machine was fine if the controls were fine.

We thought that was a fluke. I checked my INR in a few days after an adjustment down. I got a reading of 7.8. I know that wasn’t right. Hospital said it was 3.5. I ordered a new box of strips, more liquid controls and started comparing batch to batch to INR. The batches were matching up but none of it to the lab. The lab readings were how I was feeling. It got me thinking how long was this machine off a few months ago when we assumed it was right. I was very lucky I didn’t have a full blown stroke because of the machine. It was at that point I stopped using the machine. I just couldn’t trust it any longer.

After about 6 months, I got my INR back on track by going to the lab once a week. I thought I would spend the money and get a new box of strips since the others were expired and see if this expensive machine would work for me again. I started again doing comparisons. The machine was still off. I am done using it. I will deal with the hassle of going to the lab. At least I know those INR’s are correct. I have smashed the machine into a million peices and really disgusted at what a waste of money it was. I could have donated that money to the APS Foundation of America, Inc or something. Next time I will do my own research before believing word of mouth, promotion from a group and taking everyone’s experiences into consideration. I encourage you to do the same and make an informed decision. This is your life and it could be your death that these machines could cause.

Since Roche doesn't like their information on line. I will put it on line for them - at least I can say they were willing to provide the information that was asked for them. (Thanks!) These are the information sheets from the company talking about their standard of deviation and that they warn the APS patients of use of the machine.

ProTime, the makers of the professional model Hemachron, Jr. which also has problems reading accurate with APS patients. I know the issues with the Hemachron, Jr were reported to the company and the FDA as an adverse event.

The rest of the companies have their information readily accessible. Thank you for keeping it real and not hiding the information!

Happy Reading. Use these machines in general at your own risk. If you don't have autoimmune problems like APS, these machines may be ok for you but be fully aware there are problems with these machines and don't let anyone tell you there isn't a problem. I have collected enough factually supporting information to support my stance...add in my personal experience and others.....well.

On a side note, I have been hearing good things about the CoaguChek XS, well from 2 people - that have APS but their disclaimer is quite clear. Buyer Beware!

Click here to see this story on Tina's Website