Costs and other Basics?

[Elgato]

I have read quite a few threads trying to get the overall feel for what it is like to be on Coumadin.

Most of you home test once a week and go to the lab monthly? Is once a week enough for something that is so critical and potentially erratic?
Does anyone not home test?

Is falling over your range just as bad as falling under?

We currently have United Health Care but will go to Medicare in five years.

What is the best home testing machine and what would it cost? Does insurance typically cover any of it? Same question for the supplies or strips.

Is actual Coumadin better and is it a lot more expensive? How much does insurance or Medicare cover?

Anyone tried Costco for this stuff?

Have the new Obamacare rules had any effect on the costs?

Thank You

 

[Cooker]

I test once a month at the cardiologist. I have been on the same dose for 8 years and I have always taken the generic. To me warfarin has never been a problem. In my opinion it is not nearly the boogeyman that some make it out to be.

 

[MrsBray]

I'm on warfarin. 25 days after surgery. The first week I was tested every 3 days. Now I'm tested every 8 days, and still trying to regulate my dose. I asked about the self-testing, and doc says he only has one patient that self-tests- a retired nurse who spends half the year in the wilds of Alaska. I'd rather go to the same lab each time - consistency! My insurance covers the lab, and I have not inquired about the self-testing. (Humana HMO)

 

[wxman]

I have never home tested but go to the lab at the Dr. office once a month. Take generic warfarin. Have not had any problems in the 10+ years I have taken it. It has been a total non-issue.

 

[pellicle]

Hi

Is once a week enough for something that is so critical and potentially erratic?

totally ample ... the main reason its erratic is clinics fooling with your dose frequently and measuring frequently and than adjusting the dose and then measuring ... like watching a kid learn to sail ...

Is falling over your range just as bad as falling under?

in theory falling under is more dangerous as you're statistically more likely to have a stroke. But don't panic, your blood won't turn to a curdle if your under even for a week. Hell people have been uncoagulated for years and had no issues. Its a stats thing. Imagine you live in a tiny town in the middle of nowhere. Population 100 ... if the streets are quiet you can probably walk across the road with your eyes closed no problem heaps of time.

If I'm under I just test again in a few days, mainly out of interest and information gathering. It has always returned within the next test, frequently doing nothing about it at all.

What is the best home testing machine and what would it cost?

what is the best car? what is the best golf club brand? Similar question. I personally use a Roche Coaguchek XS, others here swear by their INRatio. The XS is IMO a better machine (starts getting into my fireproof suit) and uses the latest 'generation' method for assaying the INR.

New is a bit dear (google it) but on eBay you can pick up one with almost no usage (like probably bought it for nana and she won't use it) for about US$500 and depending on where you like to get ripped off you can get the strips anywhere from US$150 for 12strips at your local "drug store" or get them online for about that for a pack of 24.

Inevitably you'll waste some strips learning, so read the threads here about getting enough blood and the right technique and the right size lance bit (the needle thing which pricks you and is disposable ... although I use mine for around a year).

Lastly I'll back up every other post before this and say its a non issue for me too (actually its kind of interesting).

 

[clay_from_nj]

About 1 1/2 years post AVR, generic warfarin, go to the lab for testing once a month or so. Same steady 7.5mg per day. No problem.

 

[Elgato]

Thank you for the responses. Some of you make it look so easy.

So, is the typical (doctor directed) typically once a month at the lab and you home testers are doing it for added security?

Seems like you could really get into trouble and not even know it at once a month.

What is the most common scenario?

 

[pellicle]

Hi

Thank you for the responses. Some of you make it look so easy.

It is easy ... the only tricky time is starting, what I read suggests again that is caused by medical people failing to heed research advice.

Basically its easy. Dr's make it complex (perhaps to justify the charges?)

Seems like you could really get into trouble and not even know it at once a month.

Its possible but unlikely. With finger prick home testing costing about $6 a test why not test weekly?

FWIW I only home test. I get a one off lab reading about once a year just to double check

That's it...

 

[Superman]

Warfarin for 23 years. The generic wasn't approved for the first chunk of time. Switched to generic a while after it was approved. No issues with either.

Agree with the assessment on the clinic management. Keep in mind, many of the people "monitoring" your dosing have less experience with it that many of their patients. They are also dealing with many different patients, all of whom respond just a little different to diet and dosing changes. You'll learn what works for you and in time you'll be out of range and telling your Dr. how you plan to correct it. Typically they'll just agree and document. If you have too forceful a clinic that micromanages your dosing- you may find yourself on a yo-yo that's difficult to stop.

Best advice I ever got on here is to view your dose as a weekly dose rather than daily. Much easier to control the ups and downs that way. I don't take 5 mg a day. I take 35 mg a week. If I need a slight increase, it would be to 36 or 37 mg a week, not to 6 (42) or 7 (49) mg a day.

My "coumadin clinic" provides through insurance a leased machine and testing strips are covered. I only test at home, but I'm monitored by the clinic. I do not have to go in for lab draws to test the machine. You'll want to talk to your cardiologists office and see what they've worked out for this.

Edited to add: Pick a time of day that works best for you. Common practice is to dose at night, which may work for the typical elderly patient in terms of consistent timing of dosing - but I started at 18. I was almost never home in the evening. Taking it when I got up in the morning always worked best for me. 23 years later, and I still take it in the morning. Consistency is key.

 

[MarkU]

I've been relatively stable on the same dose (5mg/day) for the past 13 years. As long I am in range (2.5-3.5), I go to the lab every six weeks to get tested. On the rare occasions I've been out of range, they have me come in every two weeks until I'm back in range again.
I have a $20 co-pay under my current insurance policy. I started out on Coumadin, but switched to generic Warfarin after a couple of years due to cost. No noticeable effects in switching.
My cardiologist has suggested that I consider home testing - he's thinks I'm one of his few patients he would trust to do so. My insurance would cover the initial cost of the test unit. Thinking about it, but I still find some comfort in getting my INR checked professionally and also having my Hr and BP checked at the same time.
Mark

 

[Protimenow]

I'm almost always in agreement with Pellicle. I'm no in complete agreement this time.

I'm not certain about the safety of being UNDER range for more than a week (I had a TIA after trusting a meter - and actually being below 2.0, according to the hospital) for about a week. I would be uncomfortable with an INR that is UNDER 2.0 for more than a week or so. (That said, I went a few YEARS, some years ago, on a steady dose that probably kept me in range, with NO testing).

I currently advocate for weekly testing, although I've recently been kind of lazy and waited 10 days to 2 weeks between tests.

As others have noted, it's frequent changes, or large changes in dosing that can cause INRs to swing rapidly.

As far as meters, I did testing with a few different meters, comparing them to each other, and to the lab. My testing -- perhaps specifically for my blood -- made me conclude that the one that I trust the most is the Coag-Sense. The Coag-Sense has given me INRs that were sometimes slightly lower than the lab or the other meters. Because I'd rather have an INR above 2.0, if I see a 2.0 on the Coag-Sense and the lab value is 2.3 or 2.4, I feel like I'm doing okay. The CoaguChek XS scored slightly higher than the labs - but not troubling so, as long as my INR didn't clime above 3.5 or higher. At the higher INRs, the results were sometimes considerably higher than the lab values. (There were few times when my INR was actually high enough to throw the XS off by TOO much).

The InRatio and InRatio 2 were always higher than the lab (and, of course, the Coag-Sense). The value was often MUCH higher than the lab (by MUCH HIGHER, I mean by .5 - 1.5). I decided NOT to trust my life on the InRatio. Again, this could only be a quirk with some factor in my blood that makes the InRatio work well for many users -- but, for myself, I will not trust the meter. I know that the InRatio is used by many people, who are very satisfied with it.

The ProTime and ProTime 3 may be fairly accurate, but more difficult to use. For ease of use, the other meters are considerably better.

As others have said, you can often get a good deal on the meters on eBay. I know that I have. I'm not sure about how well insurance covers these meters, and it probably doesn't hurt to have your own meter. The only meter that I bought that didn't perform well (other than the InRatios) was an As Is ProTime meter that the seller described as not working -- I bought it for the power supply. The other meters have worked fine for me. (BTW: I have an extra Coag-Sense meter).

I hope this message is useful to you.

 

[Protimenow]

A few other things -- I haven't had any issues with Warfarin (generic Coumadin).

Dosing calculations are usually based on weekly dose -- but if at all possible, try to take the SAME dose every day. (In theory, a person on a weekly dose of 35 mg could take all 7 5 mg pills on a Saturday and satisfy the requirement -- but may have a massive bleed a few days later). If you aren't taking the same daily dose, your INR may be different depending on which day you do your testing.

Coumadin/warfarin is not to be feared--just respected. Regular testing (weekly, if possible), and minimal adjustments should make living with this anticoagulant almost a non-issue.

 

[Jamey T]

I agree with the posts here. I do a monthly to 6 week lab test, but mostly to humor the coag clinic. There is so much experience here that you can learn from, and the people at your clinic are not taking warfarin. I told my doctor that I have a vested interest in my INR, and he replied that he wished all his patients had that attitude. He has gone to bat for me against the wishes of the clinic, and they are in the same building.
That being said, I do use the lab results to compare to my meter. I am comfortable knowing my meter is off a few tenths, with it being farther off the higher my INR, but that is MY meter, not yours. Also, every lot of strips has tested differently. I always compare the last four of my current lot with the next lot, and a blood draw or two to compare things to also. Yes, that means up to 3 tests in a day, but I am worth it. I also pay out of pocket.
As far as what it is like being on warfarin, umm, I haven't noticed anything different. At all. I just have to test, and I adjust my dose like Protimenow does. I base my changes on my weekly dose, and take the same dose each day. It just makes sense to me. My clinic says it doesn't make a difference. They might be right, but I am more comfortable keeping it even. I also take my dose every morning, because it is easier for me. My clinic wants me to take it in the evening, but I forget my evening pills every so often. As far as my range, from the people here and their experiences, I would rather be over my 3.5 than under my 2.5.

 

[tom in MO]

If you home test, there is no need to go to a clinic. I got that from the literature, my cardiologist, my coumadin clinic and the supplier of my home testing machine. Insurance company agrees as well

My range is tight 2-2.5. My INR can go up and down depending upon activity, what I eat, illnesses and short term drug prescriptions. My clinic will let me go 3 weeks if I am stable between tests. If I am not stable, it's never more than once a week. My biggest changes come when I go on antibiotics (e.g. for teeth cleaning). If I was doing 6-week testing, I'd probably miss most of my adjustments except those related to seasnonal activity (e.g. I take 35 mg a week spring, summer and fall, and 33mg a week in the winter).

Cost is very hard to determine and depends upon your insurance carrier. For me, direct blood draw is free. I used to have a home testing provider that gives a service and you pay for the service (i.e. meter, supplies, instruction, and I call the service and the service informs the doctor of my results). Now I get the meter for free, charged for supplies and don't have any service, I call results into my doctor. A third option is to buy the meter and supplies and insurance reimburses for the direct costs. I am not sure if my insurance offers this. It was not offered it when I spoke to them over the phone.

I found that often the insurance company and their person who answers the phone is ignorant. They never told me my first provider was no longer in network at the beginning of the year and the insurunce company was the one who sent me to them in the first place. In my experience the provider of the meter and the cardiologist's nurses often know more than the insurance company about the benefits. They have been right when the insurance people could not figure out the answers. Make sure you document all your calls.

If you're rich, it's not a problem I know Medicare does cover home testing since my m-i-l got hers on Medicare.

 

[pellicle]

Hi Protime

actually, thanks for picking me up on this ...

I'm not certain about the safety of being UNDER range for more than a week (I had a TIA after trusting a meter - and actually being below 2.0, according to the hospital) for about a week. I would be uncomfortable with an INR that is UNDER 2.0 for more than a week or so. (That said, I went a few YEARS, some years ago, on a steady dose that probably kept me in range, with NO testing).

at the time I was trying (and failing) to be brief. While I was writing my post I was also thinking of the example of Dick, who actually didn't take his warfarin on a trip with him (thus didn't take any) and had a small stroke.

I meant to add that as a counter to the view that others don't anticoagulate and get away with it.

I think Dicks analogy of russian roulette with INR of lower than 2 for longer periods is about right. Some people won't have a problem, others will.

I was only trying to reduce any "panic" reactions of being under 2 and then taking a double dose (as I've read here before being advised by clinicians) ...

and look at that ... failed to be brief again ... no wonder I don't use twitter

 

[tom in MO]

With my range being 2-2.5. I don't panic with my valve when it gets under 2.

It was just under 2 at 1.7 two weeks ago. I take 5mg except on Tue/Th when I take 4. I was told to take 5mg instead of 4 on the next day and retest in a week. After a week I was 1.9 and they said hold steady and retest in 10 days.

 

[Protimenow]

What scares the hell out of me with a range that goes down to 2 -- especially for self-testers, is that the meters often report vales that are higher than the actual values. A 2.0 on one meter (I won't say which one, here, but other posts have made it clear), may be a 1.7 in the hospital after you've had a stroke (like I did). I think that it's safer to add a margin of error - especially for self-testers - to accommodate for occasional (regular?) results from their meters that actually put them into danger. I think that, especially for self-testers, a range of 2.5 - 3.5 is safer, because it almost assures the user that the INR IS within a range of around 2.0 - 3.4 or so.

Since my TIA, I'm having blood drawn monthly, but testing every week or 10 days (laziness keeps me from testing weekly, although I strongly advise EVERY VALVER on coumadin to test once a week). I persuaded my clinic that, because I self-test, I don't really need to come to the clinic every month -- I now go every three months. i get the blood test for free, so I use it to compare to my meter.

No -- I am NOT independently wealthy, but the few dollars a month that I pay for strips still seems like a fair tradeoff compared to the cost of a stroke.

Tom -- you're worrying me. I wouldn't be happy with ANYTHING below 2.0. Please consider dosing so that you're AT LEAST above 2.0 - and preferably 2.3 or higher on your meter. Speaking from personal experience, it just doesn't seem safe to carry an INR below 2.0 for more than a few days at a time.

 

[chaconne]

Other than taking a daily pill and paying some attention to INR range, the only effect I notice from being on Warfarin is that I have more bruising. It's often unexpected, in a place I don't remember bumping. Many times when I get hit or scraped in an area and expect a bruise, nothing shows up.

 

[tom in MO]

Protimenow, thanks for the concern. In the past I've asked specifically about being less than 2 and have been reassured. I was told that different valves, different positions, different ranges. Mine supposedly has a prove track record that's why the range is 2-2.5. The lowest I've gotten was 1.4 and they double dosed me over a period of 2 days and retested in a week.

 

[pellicle]

Hi

... bruising. It's often unexpected, in a place I don't remember bumping. Many times when I get hit or scraped in an area and expect a bruise, nothing shows up.

funny you should say that, but only today I'm sitting on the throne wondering how I got a bruise on my left calf muscle. I distinctly recall banging my shin on the bike yesterday (no bruise) and stabbing myself when cutting out something from plastic (yes, push knife away) which actually barely bled at all (*hard to pull sympathy with less than I get from my INR testing).

Perhaps the answer lies in that the same things happened before but now I'm paying attention to each event more?