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

Normally I wouldn't copy and paste like this, but I've been doing a little "light reading" lately and what I'm reading is absolutely absurd!!

Let's take example #1 for instance:

You are welcome to your opinion about the accuracy of the machines but I have not seen any study or data that indicates it is less accurate than a lab test? I think it is just the opposite and more accurate than many lab tests. For the lab test you have the draw, the handling, the storage, the transportation, a time lag that can be up to several days before the test is really done and all of these can contribute to a wrong result from the test.
Different tests (reagents at least) are used in different labs. With the machine, the blood is always fresh, everything is automatic and there is almost no chance for an inaccurate test. In addition you don't get collapsed veins or someone jabbing you and moving the needle around trying to find a vein. Add in the ease of not needing to even leave the room, getting the results in minutes, available at any time day or night and even on holidays and I can understand why someone might want to use a machine. The machines in Doctors offices and some labs are the same machine used at home.
BTW, I would suggest anyone who gets a strange reading, high or low, from a lab (or a machine) should have the test repeated as labs do make mistakes and we need to be certain ours are right before we make any drastic changes. This is much easier to do if you have a machine.

Now if we break this down a bit and look at the facts. The companies that make these home testing machines put disclaimers in their package inserts about APS patients and possible inaccuracies. No data? There's data from the company who make the machines.

True that when the blood is tested with the machine it's fresh. There are no handling issues and yeah, it's a lot more convenient. However...is convenience worth the risks that possibly having a WRONG reading will cause?

What happens when an APS patient's INR is too high? They could have a bleed...which, although may not be life threatening, could be very dangerous. What happens when an INR patient's INR is too low? They could have a clot. Maybe it will be "just" a DVT....hmm, but couldn't a DVT lead to a PE...and couldn't the clot be a stroke instead of a DVT?

So convenience basically is worth the risks of an inaccurate test and a possible bleed/clot?

I guess it is for some people.

Another example to consider:

I will say that I was told by others with APS that it is dangerous for us to use. I saw the success that so many in the UK are having, so I asked my hemo (after I found a good one that speaks frankly with me). He said that if you have the intelligence to calibrate the machine and you can learn through your doctors guidance to understand how to make simple adjustments and know when there is an emergency... He believes the machines are very helpful. He said that given the patient more control over his/her healthcare is beneficial in many ways. When I asked specifically about the things I read about APS patients, he said it was "nosense"
and maybe a "scare tactic of someone that likes drama" (His words, not mine). He explained that if you get a false high reading on the home machine, you are going to get a false high at the lab.

So...if a patient has the intelligence to calibrate the machine then they should be all set? Well, with simple adjustments and such. So what would be the reason that an office or clinic's machine would give a false reading? Perhaps the nurse or whoever in the medical field working in the office/clinic wasn't "intelligent" enough to calibrate and adjust the machine so the reading wouldn't be inaccurate. I'd certainly trust a nurse more than myself...and don't we have a story about someone who's CLINIC reading was off with the finger stick machine?

And remember we're not only talking about false HIGH readings, but also false LOW readings. Personally, the low ones would scare me more than a too high reading.

On to my third example:

I would never recomend one of these machines to a person who was permanantly positive for LA as the machine would just not worg for 33% of them (the other 66.6% would still be OK, but the constant worry of a possibility of a false high would be too much to bear. For the vast masjority of patients these machines are helping them in their daily control of the disease and helping them keep complete records to share with others on what effects their day to day INR levels.

APS antibodies tend to wax and wane. Basically, you may be positive for the LA one month and not be the next...or maybe you've have 15 tests and been positive for it once...this does happen in APS patients.

33% with a positive LA may have inaccurate readings. Let's break this down a bit. If you have a positive LA and you get your INR drawn 90 times with a finger stick machine, 30 of those have the potential of being inaccurate. Do you know when those 30 times are going to happen? Can you guess or determine when by how you're feeling on any given day? Should you have to guess at all?

Would you buy a computer that worked 66% of the time? How about a car? Would you want your electricity or heat to only work 66% of the time?

Would you pick a doctor who misdiagnosed people 33% of the time?

I don't know...to me, the proof is in black and white. The data is in black and white. Maybe there's not an official "study" but there is literature out there.

Educate yourself before you buy into this INR machine business. Convenience isn't always the "best" way.

Let's also consider this: the word "may" is used a lot in these types of posts. Basically, it's used to cover the poster's ass. And yes I know, I use it too...but think about it:

• Stool softeners "may" cause diarrhea.
• Condoms "may" stop the transmission of STDs.
  

Don't take MY word for it...after all, I'm just someone who's using "scare tactics" to stir up "drama"....when actually, I'm only doing that 66% of the time. *insert eyeroll here*

Ahh....another machine not working.

i also have aps, history of one stroke, with recurrant clots while on coumadin.
i had the protime, and when checked against the lab, was found to be faulty.
i was told by the company that it may be inaccurate for people with the lupus anticoagulant.
be careful, and once in a while check it against the lab. the differences i had were alarming.
the company apologized, said i shouldnt use it, and refunded my money. that was in 01.

Originally posted on Healthboards:
http://www.healthboards.com/boards/archive/index.php/t-352980.html

Every few months or so the topic of home INR machines is brought up and as of late, debated, on APS support forums and e-lists.

It appears as though certain groups are pushing people to get the machines and even promoting the purchase of the machines (as if they were getting a kick back from them?). And then there are other groups who are adamantly against the machines.

These machines have put into their literature that there are "limitations" when it comes to APS patients. They mention those who have a positive Lupus Anticoagulant, however, listed here we have a personal story from someone who has a negative LA and actually has Seronegative APS or SNAPS and she had problems with her home machine.

Did you know that there can be other factors that can also affect the readings? Anemia is one thing, and also Lovenox/Heparin use within 24 hours of the reading can cause it to be off.

If you needed a carseat for your child and there were only two to choose from…would you buy the one that had listed certain "limitations" or would you go for the one that was deemed "safe"? Maybe not a good comparison, but the warnings are in black and white. Who can question that?

If you get your INR from your home machine and have to "add or subtract a point" because you KNOW it's off…what does that tell you?? What if it's off by 2 or 3 points and you only added 1? So then a 2.2 reading…+ 1 pt would be 3.2…but it's off 2, so your TRUE INR is actually 1.2??? Do you know what can happen to some people when their INR drops that low?? Clots…Strokes…PE's…

Is the convenience of having the machine at home worth risking your life over?

I am urging you to educate yourself. Call the companies, ask the questions. If your doctor is pushing this machine, do they get money for each machine sold? Same with an organization that may be pushing it…are THEY getting money for each machine sold? Talk to people who use the machines. Ask them how often they do comparisons with a vein draw. Read the stories of people who have had problems. 1 in 10 is one too many if you ask me.

Educate yourself. Make an educated decision, not a knee jerk, convenience decision. The "limitations" are in black and white. If you have APS…YOU are the limitation.

This is also referring to the finger stick machines at the clinics or dr offices. One of the stories was from a dr's machine and not a home machine.

It's your life, your decision. Is the convenience of not going to the clinic worth your health and possibly your life? How convenient will it be for yourself, your family, friends and loved ones if you're dead?

These are excerpts taken from a thread in the APS Friends and Support forum located at www.apsforum.com.

How about the finger stick in the hospital lab? I like it because I know my INR right away. But if the elbow stick is more accurate.... The only time I had both a finger stick and the elbow stick, the numbers were the same.

I had the chance to get a little evidence on my own. I had a blood draw from the doctor's, and asked them to do a pt/inr, then I went straight to the hospital where I have a standing order. and got a finger stick. the finger stick was 1.9, the venopuncture was 2.3. Venopuncture from now on.

I'm going to tell the people at my hospital that APS people shouldn't get fingersticks. I think we all should tell our doctors, phlebotomists, vampire people, etc. that venous is the only way for us APS folks. They don't necessarily read the literature, and APS is such a new diagnosis that they haven't learned this in school, and it hasen't hit the continuing medical education courses. So we 'special ones' surround us with people who do know that. lrb

http://www.apsforum.com/forum25/10469.html
(registration required)

I gave the finger prick test a try, too. Came back as 4.1, so they said "great, let's leave your dosage alone." I told the dr that I was not confident in that result because my body was telling me that my INR was below 3. I asked to be sent to the hospital for a stat venous draw. They humored me and I had the stat draw within 10 min. It came back 2.3. No more finger stick for me! The dr called the company (INRatio) and the company said it wasn't accurate for a lot of people with APS. Now, the dr is trying to find out which of her patients have APS, so she can check all of them as well.

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

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. 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.

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

Goes into the ER...

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

ONE POINT FIVE????? omg

That is a HUGE difference...HUGE!!!!!

So he had a TIA everyone.

I'll tell you this. I am going to be on the 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.

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

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!

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. 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.