Tuesday, September 11, 2007

Jeanette's Experience

I recently purchased a self testing device called CoaguChek XS. It is
manufactured by Roche and I purchased it via Tapestry Medical in Livermore,
California.

I was so excited to finally convince my doctor to give me a prescription for
the device. Even though I had to pay for it myself (it cost $2300 and my
health plan would not pay for it), I thought it would help me to regulate my
INR.

My doctor suggested that I continue getting vein draws at the lab while I'm
also testing at home for a while to verify the reliability of the machine.
The first time I tested last week the difference between the lab draw and
the self test (conducted within 30 minutes of each other) was only 0.3 so I
was highly encouraged.

Unfortunately, a week later and the second time I tested, the CoguChek said
my INR was 4.3 but the vein draw said only 3.5. For me this is a
significant difference because at 4.3 my meds are reduced but at 3.5 I stay
at the same dosages until the next test.

I called Roche and expressed my concerns about the reliabilty of the
machine. They told me that at higher INRs (above 4.0) the machine becomes
less reliable. They also told me that the machine doesn't work very well
for people with Antiphospholipid Antibodies because these same antibodies
are on the test strips! She said that especially when someone with APS is
having a flare up the machine may not work well due to the high level of
antibodies in the blood.

I feel like I wasted $2300 and I think the company should have told me that
the machine doesn't work well for people with APS. I'm frustrated with
myself for making this purchase without doing more research.

I'm sharing this with all of you in hopes that I'll be able to prevent
someone else from wasting their hard-earned money.

By the way, I'm asking the company for a full refund and if they refuse I am
going to file a claim in Small Claims Court.

- Jeanette in California

Originally posted on APLSUK (registration required) http://health.groups.yahoo.com/group/APLSUK/message/49519

Todd Had a TIA Using a Finger Stick Machine in his Lab at the Hospital

Written by Todd's wife, Heidi in the APS Friends & Support Forum

Or for those people who are thinking about getting one...

PERFECT EXAMPLE of how they just DO NOT work with APS patients....

Todd's been getting LAB INR MACHINE draws for months. We DID comparisons...a few in a row...all was fine...they matched, I was ok...a bit skeptical, but ok with them.

Well, Todd hasn't been feeling well. :fever: for a week or so now... Went to get an INR drawn...usual way, finger stick in the lab. INR came back 3.9

A little high for him (his range is 3-3.5) but still ok...didn't explain why he felt like dog doo...but ok, stranger things have happened, this is APS fgs. :dunno:

Anyhow...he starts getting right side numbness WITH the Migraine that he had. :head:

Goes into the ER... :ambulance:

Well folks...they did a VEIN draw...Guess what his INR was???? 1.5!!!! :hissy:

ONE POINT FIVE????? omg :duh:

That is a HUGE difference...HUGE!!!!! :woah:

So he had a TIA everyone. :exhaust:

I'll tell you this. I am going to be on the phone :phone: tomorrow MAKING SURE that was his LAST INR draw with the finger stick. it's back to good old fashioned vein draws for Mr. Todd. :mad:

He hasn't had a TIA since APRIL!!! :banghead:

So, please anyone...tell me again WHY you want a machine?


Here's a thread to read also... http://www.apsforum.com/forum25/6543.html
(registration required)

You're putting your life into a machine that is KNOWN to be wrong with APS patients...think TWICE...THREE times...FOUR times and Just say NO! :thumbsdown::thumbsdown::thumbsdown:

Original Post: http://www.apsforum.com/forum25/6943.html (registration required)

And in his own words:

Here is the Jist of the ordeal I went through. I was feeling tingiling and numbness on my right side and a migraine the day before i went into the clinic just so you know. I went to have my blood drawn at the aticoagulation clinic yesterday. And my inr was a 3.6 from a finger prick.:thumbsdown::thumbsdown::thumbsdown::thumbsdown: Than I talked to my hematoligists nurse practioner right after that and she couldn't figure out what it was from. She thought it could have been from the migraine. So I left there and went to another hospital because if Heidi were to come to see me I didn't want her to have to come down to that hospital because you have to drive down dark roads to get to the hospital. So I went to the one close to the house. They got me in. Did and INR draw and it was 1.5. Thats a big change from 3.6 don't ya think. They gave me compazine and 3 tylenol for the numbneess and tingiling and migraine and it went away. And they did a head ct and ruled a TIA. They didn't want me to leave but I was able to finagle my way out by saying I have lovenox at home. So to people who want to get Inr machines for the house. Don't get them look what it did to me.:thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown:

Tina's Experience with Home INR 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

Reasons

I started this blog to help share the stories of patients who were talked into buying and using a home INR machine by either other APS patients or by their medical doctors. These machines have disclaimers in their paperwork that says they are NOT compatible with APS patients. Antiphospholipids are sometimes used as a reactant. YES, antiphospholipids!

If you have had a negative (or positive) experience with a home INR testing machine and you'd like to share your story, please email me at apsno2homeinr@gmail.com and tell me your story. I will post it here to share with others.

Thanks for reading.

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Who am I?

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My goal is to educate APS patients on long term coumadin or warfarin about the possible dangers of using, and relying on Home (finger stick) INR machines to test their INR. Nothing more, nothing less. **I am not affiliated with any APS group, but a member of many. I am just trying to educate people about these machines.**
Disclaimer: This blog was created to educate APS patients about Home INR and finger stick machines. The posts here are strictly the opinion of the author(s) and links are provided where appropriate. I am not a doctor.

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