Coagu-ceck--- strip testing - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Coagu-ceck--- strip testing

jetjetjet profile image
14 Replies

i have recently been sent to a coumadin clinic for my warfarin testing - of this i am not happy ,but thats the way it is for now anyways - i have had 2 major dangeruos problems with in the last month .. thats why i am at clinic - i question the accuracy of these machines ,i tested blood at lab monday 3.1 -- tuesday at clinic 5.6 -- thursday at lab 3 .3--- i have been told by a very reliable sourse that if you are L.A. positive this alone can offset readings- in my case by 2.3--- woman doing my clinic testing i think just doesn't get it - i need so help here my friends --some literature stating this is a problem with these machines -- i have 2 surgeries this month , the 1 st being one my INR can't be above 2.3 ????? thats the spread of the last tests?? any help here would be great------- maybe some one has the paper work that came with their machines that states this-- i test every 3 days - monday i'll be testing again and i got to find out just what machine they are using. this woman thinks she knows every thing and that doesn't set well with me as i know she 's wrong on alot of what we have discussed. . i'm going to have to hit her with everything but the kitchen sink ?????who knows mavbe that is what it will take ?????? HA HA HA -- please get back asap thanks to you all ----- not so fat jet [ flipper ]

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14 Replies
jessielou profile image
jessielou

Hi Jet, Flipper

Just had a search around old blogs on here. Found these articles, thanks travelnut, stoptheclot.org/News/articl... And annals.org/article.aspx?art...

Hope these links work,

Should add that this doesn't affect all APS patients, just some, but not all of us that are Lupus anticoagulant positive.

Take care gentle hugs love Sheena xxxx :-) :-) :-)

MaryF profile image
MaryFAdministrator

Keep cool and calm Jet, you are getting to the bottom of things as usual, not being an INR lady, my detail will not be as good as other's with their own personal experience. Keep us posted. Mary F x

daisyd profile image
daisyd

I am trying to rack my brain this am, not working. I think this was mentioned at the Hughes foundation day / lectures etc and I think in the literature which comes with the machine.

It was the anticoagulant clinic who suggested I get one. Best thing ever!

The company are very helpful coagucheck they maybe have some answers for you, how long have you had your machine ? Needs MOT

It was said at meeting it was ok to use as far as I can remember as I wasn't shocked about wasting money.

I am LA positive as well.

I have had a look at the literature again couldn't see anything this am. I would phone them

janekins profile image
janekins

Hi Jet.

Sounds like it would be better if you were tested venously rather than by the machine, at least until after your surgeries.

Good luck x

JoyceyMee33 profile image
JoyceyMee33

I have a coagu check machine which I wouldn't be without. If you are worried about the different readings between your machine and clinic readings, may I suggest that you take your machine with you on your next visit and ask them to do a comparison test. The clinic I attend were happy to do this. The variation was only .2 ie: my machine 2.6 clinic 2.4.

Hope this helps. Take care.

Joyce

thomas_tz profile image
thomas_tz

Hi, if you open a box of strips, the leaflet inside should clearly state that LA positive patients should be monitored for some time with venous results compared to the machine results. At least this is what my leaflet is saying ( not in English, as it wasn't bought from the UK ). I would ask to see the leaflet, if nurse/doctor seem oblivious to this fact.

I mentioned this to my GP, who wanted to move me to machine testing, and she said it is better to stay on venous testing. I hope this helps, Thomas.

jetjetjet profile image
jetjetjet

Morning all- just got moving here about an hour and a half ago!!!! i don't have a machine - they always tested my blood every 3 days at the blood lab. but because of 2 close calls -Dc. decided they couldn't deal with my decline so they sent me to a coumadin clinic that uses these machines - i don't have alot of trust in them after all i have read.some people just don't have as good of luck as others- as i said monday test at lab - 3.1 -- tues. test on clinic machine 5.6 --thursday lab test 3.3--- something is wrong . the woman that ran my test at clinic answers are i have been doing this for seven years- she claims to have all theses aps patients ?????? i have never met any but Kristina-- and i have lived here all my life { so far anyways , i'm still kicking } ha ha i'm not even sure what make or model machine she is using ? but you can bet your bippy that i will know today , i see her at 10:00--i'm incline to agree more with the lab results .i will take what i got so far.she has been saying she has so many aps patients ,and she never has run into this before ???? and she can't give me any good reasons--and she said she doesn't need to know of my problems just ajust my warfarin ????- i did get chance to a newbe at there clinic last time and she is alot better. to deal with . she has been a nurse for 14 years before starting this in Nov.-- and she said it was sure a mess with my inr bounce - i would rather deal with her and we can learn together-- than to be just left out in the dark with the 1 st one.-- i was on the Cougu check site an all i can get is what type of machine do you have - enter serial # OR what type of insurance do you have and what is covered. the pro's and con's etc. but i have this feeling Miss know it all wouldn't agree with me if i had an expert there with me? just a gut feeling- it;s hard to deal with new things that your unsure of when you can't get any answers from the very people doing the testing.if this keeps up the little french blood will boil and that will be the end of all there tests- the great nurses i had ask me to give this a shot - so i am but with the surgeries starting in less that 2 weeks ??????if i could get a copy of one of the info sheets that came with a machine - Then i would have alot to go to battle with ; and i would go right over her head if need be. -- thanks everyone for the feed back it's a great help- with my mind set also..----------------------------- not so fat --- still swimming - flipper --- jet

Trixylarue profile image
Trixylarue

My daughter can't have her INR done with the machine that uses finger pokes. I guess she was fortunate...the machine read error instead of giving a false reading! I should add, they had never had it do that before. She has doesn't have the LA antibody, but the anticardiolipin. She HAS to have it done with a venous draw. Good luck!!

GinaD profile image
GinaD

For what its worth -- for about 2 years I had my INR run by Lab Corps., and it was a finger stick so it was probably a coagu check machine. When I brecame a patient of my current hematologist he asked me to have my INRs done by venous draws in his office. If I femember his words correctly, "Those machines are accurate . .. . until they aren't. Id rather deal with numbers I can always rely on."

jetjetjet profile image
jetjetjet

Thats for that info --- as long as i have been on this site--- it has always as far as i am concerned that this was the way things were for some of us? not all but it's up to us to figure out just what is right for us ?{ Dc 's cant seem to get it together} at least not in my case - there is no hand book --no follow this??? thats why we NEED each other . -- gotta go maple surap sap season going on { one of my high lights } ?? not to many going on these day's for me. can't stay up to late ?!?!@!@##^&^$$#@!@$^&*--- DC's orders :-) i THANK YOU ALL -- FROM MY HEART AND SOLE- gotta use the mens room and get on the road ------------- you all are great---------------------------- one the mend -- gettig skinner JET-- !5 hours in the pool today -- with out my MERMAID --- JESSSIE ---THANKS gotta go in many ways but one :-)

tassie profile image
tassie

The machines aren't accurate for me either and I have my INR checked by venous draw.

tim47 profile image
tim47

Jetjetjet. My comments seems to have not got posted. Check your personal messages and email me if you want copies of the leaflets from the strip boxes to see what they say.

Tim

ddhl profile image
ddhl

My hemotologist didn't believe me when I told him my numbers were not accurate when taken with a fingerstick. So I had each (vein and finger) done at same time on 2 different occasions. a whole point different. I have lupus and APS. I hope you were able to straighten that know-it-all nurse out.

jetjetjet profile image
jetjetjet

Hi and Thanks--ddhl---------------------i do not have Lupus -- thank god -- how ever i am L.A. positive. thats what is and will give me a problem with the finger testing-- if in fact i was not going into the surgeries-- may be i would'nt be so concerned--- { no i should be }- i take that back - no one of us should have to deal with this, it should be know. --------------greeeeeeeeeeeeer- O Well thanks for your responce and concern-- we live such a srewed up life and each to thier own -- it's no wonder we are so insecure- or at least i am------ ---:-) wil get back after the surgery __________________ thanks again ---- nervous jet

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