Hi all! I've had APS for years and have now developed Lupus also. Doctor says it will be a few more months before I know if the Plaquinil is working for me. My question is, Has anyone used an Alere home inr machine. My coumadin nurse is really pushing for it. My Inr has not been theraputic for weeks ) 1.6 - 1.7 ) even with gradually increasing the dose every day. I pushed back a little today about the machine because with my Inr being out of wack and the new diagnosis of Lupus , I just didn't want anything new to worry about right now. I also mentioned that I read somewhere that the machine will give a false higher reading because of some reaction with the strips they used. She flipped so I would like to know of anyone's experience with the machine . thanks Deb
Self testing inr: Hi all! I've had APS... - Hughes Syndrome A...
Self testing inr
I know Kirstin Lure 2 has her own machine and she is in Sweden and does well with it! R u from England? Cuz in USA they don't allow that yet? I have heard good and bad! The machine breaking and so on! Yes also read and heard false readings! I'm sure you'll get plenty of responses soon! Good Luck my dear!
Hi I have been testing myself for three years and never had a false reading or problems with my machine. i use a Roche INR machine, and have had the same machine all this time, also know alot of self testers who have had the same experience. I have seen a lot of bad feedback from the US APS sites in the past, which i found a bit hysterical to be honest.
I had a Coagucheck machine (I think made by Roche?) before going off Warfarin and it was about .2 out from lab test but consistently so. You can adjust your Warfarin once you know the readings. eg if lab was 2.4 machine was 2.6 and there is a little bit of wiggle room once you are getting consistent results.
Hi.finn.may i know what aps shymptom you had?and what lupus shymptom you have now?
Hi I was diagnosed APS after second DVT and hospital stay in 2007. Many tests done over several months with a hematologist. The Lupus diagnosis is new since the fall. I was very tired and achy/ I was running a low fever as well as memory issues for a while but assumed It was depression related or because of low inr or just the APS .One weekend It just got so bad so fast. Every joint hurt. I couldn't close my hands or turn my head. Finally went to GP and after a series of lab work, was referred to a reumatologist for more tests. Diagnosed with lupus and issues with my kidneys and eyes. Its all new to me so I 'm still learning,
Hi - I started self testing six months ago using the Coaguchek XS as I was having trouble meeting my INR target of 3.5 to 4.0, I was always too low. Took a couple of weeks to get used to doing it but now it's dead easy and I have a blood test at the hospital one a month to validate my testing. My self test and hospital test have always been between 0.1 and 0.2 variance. Glad I self test as it makes life so much easier, wish I started doing it a lot sooner. Best of luck.
Hi JPMcGee75 , Thanks for the reply. That's good to know that I can have the results verified at the hospital. I don't think I will have problems doing the test itself. ( I have initiated many student nurses over time l0l ) How do you get your dose adjustments? I'm dealing with a lot of new med issues related to a Lupus dx and was worried about the accuracy. Its sad to say that I have kind of lost my trust in my new Coumadin nurse. ( my previous nurses seemed more knowledgeable about APS and we taylored my dosages to my specific "body" . I have had a stable inr varying by .2 for years. ! ) My new nurse just plugs in a number to the computer. I've had to jump the line and had her adjust it when I knew it wasn't right. I know this is going to sound silly but I don't want to aggravate my nurse as it seems I am always in there while getting this Lupus thing straightened out! I think I will give it a try. thanks Deb
I'm on warfarin tablets and my GP allows me to have supplies of 0.5mg, 1.0mg, 3.0mg and I vary my dosage between 8.0mg and 10mg depending on my INR readings. I've got used to doing this increasing and decreasing the dose relative to my INR reading. I also have to compensate in that it can take 3 - 4 days to work through to the reading so little changes in dosage at a time are the best. I also keep a diary of what dosage I take, my INR reading and what foods I've eaten (which can have a real effect) and also other drugs. Over time this has proved useful and has been predictive in some instances. My wife's a type one diabetic and does the same with her insulin (injecting) so I've learnt a lot from her. Only difference is that sugar / insulin control is almost instantaneous but as said Warfarin adjustments can take 3 -4 days. So when INR deviates I just quietly and slowly adjust it and I now don't panic which was the problem at the start. It's about getting confidence in what you're doing and developing an understanding on how all these factors act on your body's metabolism. It's doable just need to take the step and be positive.
My GP, Surgery Nurse, Consultant Rheumatologist, Consultant Haematologist and Warfarin Support Nurse have all been very supportive and apart from regular appointments I'm very much allowed to manage my INR myself, but knowing I can get hold of then if I have any issues. However, have never had to and they're happy for me to manage and as the Warfarin Support Nurse says you know your body best.
Hi,
Do you also have the anti-dot for Warfarin? I take a Fragminshot when my INR is below 3.0 on Hematologists recommendation. I take the Warfarin as usual and selftest often and follow the INR till it is in range again.
If you do not have Fragmin when the INR it is too low, ask your Specialist to prescribe it for you.
Best wishes from Kerstin in Stockholm
Thanks for the advice and I will ask the question. Present instruction is if I go below 2.5 then I'm to contact the Warfarin Support Unit and I get a Heparin shot. Fortunately to date that has not been required.
Your therapeutic level is between 3.5 - 4.5 which is a high level. My is INR between an INR of 3.2 - 3.8 but we are all inviduals. Feel better on the higher level though.
As you are selftesting you should not need to contact the Warfarin Support Unit. Are you going there also?
As soon as I see I am too low I take a shot. Safety i guess.
Kerstin in Stockholm
Yes I feel better when my INR is at the higher end. Haven't been to the Warfarin Support Unit for months, its there if I need it but I'm managing OK so far. They have a system where I get sent by post a slip to go to haematology for a blood test at the local hospital (10 mins away) and I get the result back by post the following day together with another slip for the next month. Works for us.
Hi Deb
I have been using the Alere home monitoring system for over a year now, and I am very happy with it. After traveling 30 miles round trip every week to the hematologist office to get my blood tested for my INR, my doctor suggested I use the machine. I have no problem with it - - - a trainer came to the house and taught me how to use it - - - it's so easy - - - and when I see my hematologist every 3 months, after they test in the office, he tells me to self test at home to see if the reading is close, and it's usually maybe .2 difference which he said is fine. After I test, each week, I call the results into Alere, they fax them to my doctor's office, and then the office calls me if the numbers are out of whack and advises me what to do with the coumadin, or if the numbers are good they do not call me. I think you should try it it makes life much easier.
Mozelle
Hi Mozelle,
Everyone on Warfarin should selftest. The whole thing with Warfarin for us is that we need to keep the INR in range to avoid clots etc etc. So glad that you find it useful and easy. Otherwise there are other alternatives than Warfarin. Important to be properly anticoagulated with this illness.
Kerstin
Hi Deb, I have been treated for APS for a few years now, and have been self testing for about three years. best thing I ever did. So much easier to control my own blood testing. ( it helps the Hosp who set it up were very good at support ). My readings always match up exactly with the hospital readings, and everyone else i know who self tests has the same experience. Sorry you are so reluctant, as it has given me so much independance
My experience has been extremely positive, once you get used to it, very easy to self test, and saves a lot of time. i am being investigated for Lupus at the moment, so know that it is very stressful, wishing you all the best with getting your INR readings up again
all the best Rita
the aps foundation of America was adamant about not using the home units since all of them had a flaw in that the strips contained phospholipids (?).....my wife did use her unit for awhile ....but her manufacturer stated in a hidden tech bulletin that aps folks may not get accurate readings.....apsfa.org i believe During the time we used it i don't think that we saw great differences between the hospitals blood draw assay and our home unit....but since her target is 3.5 to 4.00 we had to b e certain....we stopped getting the strips 300 dollars a box .....
Where I am, UK, the clinics I have used have all recently switched to using exactly the same machines, and presumably test strips, as used in home testing (in this case Coagucheck). Not sure why it should make a difference whether you test at home or in hospital if the testing kit is the same.
You can get venous samples done for comparison, and I have (the clinic coagucheck is consistently 0.1 higher) - but I had to ask for it.
I have APS with anticardiolipin antibodies. I'm in the states and tried a home testing machine years ago as I was hard to regulate. It was a different brand than you mentioned. I got wildly inaccurate readings. I'd bring the machine to the lab with me to test simultaneously to verify accuracy. I'd get a lab reading of something like 2.1 and the home machine was blinking alerts because it had me at 6.2. My hematologist contacted the manufacturer. Turns out the reagent used in that machine was affected by the antibodies in my blood. Just an FYI.
Hi Holley,
If you are Lupus Anticoagulant like me it can be problem. I use Roche CoaguChek XS and with an INR-difference of 0,8 - 1 , but always the same difference. I have now selftested for almost 4 years
If you can not handle Warfarin you must have the possibility to another anticoagulation. have they tried Fragmin-shots for ex?
Kerstin in Stockholm
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