I want to start self regulating- how do I get started??

[Guest]

I have been taking coumadin for over 20 years and been self testing for the last 4 years or so, but I would like to start self regulating my coumadin dosage so that I do not have to keep paying the clinic everytime I call my INR in. I currently use the Coagucheck XS and Alere for my home monitoring. I am willing to change companies if that is what it takes to start self regulating. Any advice is welcome!

 

[pellicle]

I wasn't using the self tester at first and was going to a lab, so what I did was:

1) started testing before going to the lab, compared numbers (worte down my results and their results on a spread sheet)
2) when my results were close to theirs (like less than 0.3 different) I started just doing my own dose

As already knew my dose from the previous period (probably about a year) I knew what I'd need to take for a dose and started recording it

I just buy my warfarin myself and buy my strips myself

I go to my GP every 6 months or so and ask him to order a INR blood test (and often get triglicerides done too) and compare my reading with the lab to make sure I'm still close to their reading. So far its been less than 0.3 each time (usually 0.1)

I adjust my dose with caution and make my adjustments less than 1mg (and I usually take 7). I try to keep my adjustments to a minimum, following the "steady hand on the tiller" approach I learned in sailing.

I have more details on what I do and why on my blog here:
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

Best Wishes

 

[dick0236]

Any advice is welcome!

If you own your meter you can simply start buying strips via e-bay without an Rx and discontinue the service with Alere. If you are currently in a "program" with Alere you will probably have to return the meter to Alere and purchase one from e-bay. You may meet some reluctance from the doctor who is prescribing the coumadin if you self-regulate without keeping him/her advised of your INR results. My personal experience is that is cheaper and less of a hassle to go thru a program. I am on Medicare and my program is shared 80/20. It costs me about $5/test(20/mo)...... the same as the cost of strips thru e-bay. My program is operated by a division of Roche(the manufacturer of the CoaguchekXS) and, unlike my previous dealings with Alere, I am very, very satisfied with their service. They keep me supplied with strips, lancets as needed and assure that I have an up-to-date meter.

 

[pellicle]

Dick

Quick question

If you own your meter you can simply start buying strips via e-bay without an Rx

Are prescriptions needed to buy strips in the USA? (I mean apart from eBay)

 

[dick0236]

Dick

Quick question



Are prescriptions needed to buy strips in the USA? (I mean apart from eBay)

My experience is that both strips and the meters require a prescription from a doctor if you try to buy them thru any distributor in the US.

 

[big_L]

You'll have to buy the strips off EBay, unless you can get a Rx. I've started dosing adjustments myself, since I'm using a Coaguchek at home. I'm still getting a lab INR once a month.

 

[sharky7]

which meter, exact model,etc., is being used for those on warfarin, cost of the meter, and where to buy it, please, thank you.
howard

 

[pellicle]

which meter, exact model,etc., is being used for those on warfarin, cost of the meter, and where to buy it, please, thank you.
howard

I use the Coaguchek XS ... I was given mine by ATS but they are available online (ebay seems the most competitive) for about $500. I buy strips from online medical supplies and they cost me about US$130 for 24 strips. I have seen dammaged package ones on eBay in the US (which I would personally feel fine with) but the postage to Australia makes that uneconomical.

On hotter parts of the year I leave mine in the fridge and pull the container out allowing it to reach room temperature BEFORE opening it. This is because we have days here which exceed 35C and that will degrade the strips.

I personally (with all their recalls and stuff) would not touch an INRatio with your barge pole, but thats just me

DO NOT get fooled into buying any other coagucheck except the XS because the earlier model is discontinued and there are no strips available anymore. As the technology is actually in the strips, I would feel quite comfortable with buying a used one in good condition. I see auctions where "we bought it for mom and she won't use it" a bit, so seems like a way to get a bargain if you ask me.

 

[sharky7]

I use the Coaguchek XS ... I was given mine by ATS but they are available online (ebay seems the most competitive) for about $500. I buy strips from online medical supplies and they cost me about US$130 for 24 strips. I have seen dammaged package ones on eBay in the US (which I would personally feel fine with) but the postage to Australia makes that uneconomical.

On hotter parts of the year I leave mine in the fridge and pull the container out allowing it to reach room temperature BEFORE opening it. This is because we have days here which exceed 35C and that will degrade the strips.

I personally (with all their recalls and stuff) would not touch an INRatio with your barge pole, but thats just me

DO NOT get fooled into buying any other coagucheck except the XS because the earlier model is discontinued and there are no strips available anymore. As the technology is actually in the strips, I would feel quite comfortable with buying a used one in good condition. I see auctions where "we bought it for mom and she won't use it" a bit, so seems like a way to get a bargain if you ask me.

thank you so very much for your reply, i see the one your talking about, seems there is also the "pro" and "plus", the same but cost more, whats the deal if you know.

 

[pellicle]

thank you so very much for your reply, i see the one your talking about, seems there is also the "pro" and "plus", the same but cost more, whats the deal if you know.

you're welcome.
The difference is that the pro model is designed to work with multiple patient records and communicate via IR to another machine to download the data. As it happens I see (ex electronics technician) that the XS has the IR port too (and indeed tries to handshake with my laptop sometimes).

Aside from that I don't think there's anything else to it.

The XS records quite some data into the past and so if you happen to lose your data (naughty) then you'll be able to get it back from the history.

I record mys stuff onto a spreadsheet which I have in a dropbox folder on my PC ... backed up on the cloud in case my backups fail.

I also recommend you get tested once or twice per year at a clinic to 1) see how you're doing and 2) ensure that something hasn't gone amiss (like you developed some peculiar blood disorder which causes false readings)

I guess you read my blog post above.

Best Wishes

 

[Guen0071]

Thanks to everyone for their replies! (I posted the original question without realizing I wasn't actually signed in at the time- oops!) My biggest motivator for wanting to self regulate is the cost I incur from the doctor's office that I report to. They charge $20 each time I call in a test result, whether they need to adjust my dose or not, and that is on top of the cost of supplies. Do those of you who lease your own meter and test at home through a program have the same issue? Or am I getting screwed over by my doctor's office unnecessarily? I know that leasing the meter and getting supplies through the program is cheaper since insurance helps cover some of the cost, but I'm getting sick of the extra charges from the clinic. I have considered only calling in my results when I am "out of range" but then I get hounded by both Alere and the INR nurse for not reporting on a regular basis.

 

[sharky7]

I started to read your blog, as it is 310AM right now, it will take some time to take all in, thank you for writing it. I have been taking warfarin for a few years now, it does seem that i have, knock on wood, a irn that is fairly easy to reproduce, lucky me. i do feel blessed. matter of fact, my heart doc at the time i started to be on wartarin, he tested me every six months, then i had no knowledge of any of it, then all of a sudden he started testing me monthly without saying a word to me as to why, and i never asked. he never went crazy over the numbers like you said no one should, and i never will. the VA have people get high BP over the numbers it seems now that i know more, and it makes me crazy. EX: mine should be 2-3 and they go crazy if it was 3.1 or something. i consider that within range, am i wrong? from what you said, i dont think so. i really am excited to be starting self testing, and the sooner the better, as i am sure i am able to a better job, it is my health after all that is concerned here, right?
btw, i seen the meter for $300, and it seems to be going down, i really believe there will be a large market for it, and there will be tons of competition soon enough, sort of like the blood sugar meters, know what i mean?
i will shut up now, HOWARD
[Guen0071, thank you for starting this post with your question]

 

[Protimenow]

I've been self-testing for six years. For the past two or so years, I've also visited an anticoagulation 'clinic' at a local hospital - primarily to get a blood test to compare to my meter. This clinic is clueless. I would not be surprised by clinics that lose patients who they only test once a month. (It only takes a week or so for people with INRs that are lower than they should be to have strokes -- how is a clinic that tests monthly to know if a patient's INR should drop between tests?

Over the years, I've tested with at least five different meters. I've had a CoaguChek XS Pro that died just a few months after I bought it. I will never trust my life to the InRatio. Most recently, I've used CoaguChek XS and Coag-Sense meters. There is often a difference between the results on the two meters -- the Coag-Sense almost always reports a lower INR than the CoaguChek XS. The lab value seems to be the average of the two meters. I feel safer with my Coag-Sense results -- as long as my reported INR is above 2.0 (meaning that a lab may find a 2.3 or so), I feel safe.

I don't use a service. I haven't needed a prescription for the strips. I have many hot days where I live, and occasionally the strips or meters would give me a 'too hot' error. I often test late at night, when it's cooler.

I feel more comfortable testing and managing my INR on my own. I've gotten some awful advice from many doctors and clinics over the years. There should be some charts and online guides to dosing.

(I just got a Coag-Sense from under $80 -- it's an extra and I haven't compared it to my other Coag-Sense, but I may be interested in selling it)

 

[Guen0071]

I don't use a service. I haven't needed a prescription for the strips.

Who prescribes your coumadin? My cardiologist won't prescribe it and says that whoever manages it (my primary physician) should be the one to prescribe it.

 

[pellicle]

Hi

Who prescribes your coumadin? My cardiologist won't prescribe it and says that whoever manages it (my primary physician) should be the one to prescribe it.

I go to my regular Dr, he prescribes the warfarin. I let him know what my INR is, but after about the first 3 months of me being self managing (and showing him my spread sheet) he doesn't even really ask anymore. When I was in Finland for a year I went to the local hospital and spoke to a Dr there and it was quickly obvious that I had a mechanical valve and that I was in good health (walked the 5Km there in -12C) and knew what I was doing. She also gave me a prescption for the tablet sizes I needed. As I was not part of the 'nation all health' in Finland I had to pay the "unsubsidised price" which was 11 euro each for a bottle of 100 5mg and one of 3mg tablets (Marevan brand).

I believe that if you seem organised and rigorous and competent they''ll have no problems.

 

[Protimenow]

When I first started self-managing, I had a supply that I had gotten from a doctor quite a while earlier. When I ran out, and without a doctor, I got my warfarin from a pharmacist in India. Not trusting the pills initially, I mionitored my INR and the pills were accurate. Now, I get my prescriptions from the anticoagulation clinic. I also have a personal physician who saw my spreadsheet and understands that I know what I'm doing (as long as the meter is accurate), and he prescribes the warfarin. I keep that as backup if my clinic gets screwy.

Yes, warfarin can be dangerous if mismanaged, but you should be able to get a medical professional to prescribe it for you. Although I am not suggesting such a thing, it is also possible to get it online from a foreign pharmacy.

 

[pellicle]

Hi

When I first started self-managing, I had a supply that I had gotten from a doctor quite a while earlier. When I ran out, and without a doctor, I got my warfarin from a pharmacist in India.

does this mean that in the USA you can't get a prescription for warfarin if you are not being monitored, but they will let you go off warfarin facing certain stroke perhaps death without so much as a blink?

that's immoral

 

[Protimenow]

Without a doctor, in the United States (or, at least, in California), you can't get warfarin without a prescription. Apparently, the state or Federal Government must be scared of a wave of suicides or perhaps murders from overdosing the stuff. Fortunately, I am now able to get prescriptions for warfarin, but I DID have to use foreign pharmacies to buy it a few times.

In some cases, you may even need a prescription for a meter.