starting home INR monitoring questions

[Estrazz]

I will be starting home INR monitoring once I get a device and strips but I have a few questions for those that are experienced with it.

1. I have a script from my PCP for a monitor and strips so that way when I purchase one I can submit receipts and the cost will go towards my deductible on my HSA. Does anyone know where I can order one myself? It appears the medical supply sites require you to be a health care professional. I plan to call them on monday and see if I can purchase with a script in hand.

2. What else do I need besides the monitor and strips?

3. The original company my PCP was going to set me up with only rented the monitor for an outrageous monthly fee so I figured just buying my own outright is the best option?

4. Any other "must knows" for home monitoring? I want to get one asap and be comfortable with it by March as we are planning on going to Jamaica for a week at the beginning of March!

 

[pellicle]

Hi

2. What else do I need besides the monitor and strips?

A spreadsheet, to document and understand the data better from. This is my "basic" starter (which you can tell from the dates presented when I made it up).

https://docs.google.com/spreadsheets/d/1TTAPucsS2_z2uXZjUdZUONExonqLRQV6n2zn2cwOf8Y/edit?usp=sharing
Feel free to copy that and use it on your own Google account. You'll note that it has weekly slots, so just change those, and the name of the sheet (I recommend duplicating the sheet where you then rename the duplicat to the correct year, edit and alter the duplicate so you don't stuff it up) and once you know which day you will test on try to remain on that day. If you have questions feel free to ask.

3. The original company my PCP was going to set me up with only rented the monitor for an outrageous monthly fee so I figured just buying my own outright is the best option?

I agree, and I ended up with a Roche Coaguchek because over here that's the only one I can get consumables for anyway

4. Any other "must knows" for home monitoring? I want to get one asap and be comfortable with it by March as we are planning on going to Jamaica for a week at the beginning of March!

firstly don't rush it, secondly be (and I emphasise this) consistent in your approach. Obey the 15 second rule!

Here is my full page on pretty much everything there is to keep in mind and do.

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
reach out if you want a hand when you start

 

[Lynn]

You will need a lancet to prick your finger. I can’t remember if mine came with the meter or was separate, however you will need the inserts, softclix lancets is what I use, coaguchek Brand

 

[MdaPA]

Does anyone know where I can order one myself? It appears the medical supply sites require you to be a health care professional. I plan to call them on monday and see if I can purchase with a script in hand.

Sharing below link where this has been discussed before. As others have suggested, try Wilburn Medical which will sell you a Coag-Sense, not an XS though.

Remote INR taking over Coaguchek

2. What else do I need besides the monitor and strips?

You also will need a lancet device and lancets. Oh, and a rubber band to use as a tourniquet to help with getting a blood drop (Pellicle's tip).

 

[Keithl]

I use a spreadsheet and the Coag Sense tester. The Coag Sense tester keeps like 1000 reading in its memory along with date/time. It is also WiFi capable so it can get updates as needed. I am coming up on 3 years of doing mine and the spreadsheet helps with trends.

https://coag-sense.com/

If you have a script (you said you do) you can buy the Coag-Sense from this place, excellent customer service.

https://wilburnmedicalusa.com/

 

[Estrazz]

Thanks everyone. I ordered my kit today from Wilburn so I should be up and running next week. Hoping to get my INR in check soon. I had to stay in the hospital longer because my INR would not come up. Two weeks post op I was 1.9 and have went downhill ever since. I was at 1.5 and 1.6 the previous 3 weeks and just tested today and was at 1.7 after taking 80mg of warfarin this past week. The warfarin has been frustrating!

 

[pellicle]

. I had to stay in the hospital longer because my INR would not come up. T

this is simply because they didn't adjust your dose as require (probably because you take over 11mg a day and that seems to blow their little heads).

I would recommend you begin thinking in your dose as you take it NB: daily
A recent discussion on the topic
https://www.valvereplacement.org/threads/inr-change-with-weight-change.888386/post-913632
You take it daily, you should think about it daily. They have already begun mystifying it for you by making it slower than possible to actually attain your proper dose and talking to you in weekly doses.

Anyway the main thing is to keep your dose pretty regular (NB the same dose per day every day) and we should be able to keep you in range with minimal effort.

Don't be concerned about putting a few days or even weeks into learning this (it depends on you how long that takes) because its a good investment and you'll be on it for many years, so while now is important in a good beginning the thing is to develop good habits early.

 

[Keithl]

Thanks everyone. I ordered my kit today from Wilburn so I should be up and running next week. Hoping to get my INR in check soon. I had to stay in the hospital longer because my INR would not come up. Two weeks post op I was 1.9 and have went downhill ever since. I was at 1.5 and 1.6 the previous 3 weeks and just tested today and was at 1.7 after taking 80mg of warfarin this past week. The warfarin has been frustrating!

It took me a good month or 2 to get to a “stable” inr and dose. It will not be j usual for you to fluctuate a bit as well. I am not sure what valve or in what position you have it in or you have or what range your cardio suggested you stay within. I have an On-X in my aortic position and take a daily baby aspirin and while,on-X will say the range should be 1.5-2.0 my cardio and I agreed to 2-3. I usually hover in the 2.5-3 range but the last month have been at the 2.1 area. I have also had peaks as high as 3.4 and I usually don’t worry. If I am a bit high I skip a dose and recheck within 5-7 days. If I am at the range I am now I have been adding .5mg to my 7.5 4x a week until I see where it goes. There are some charts posted in some thread here which will show the stats on INR vs. events and the sweet spot is usually 2.5-3 for the least events.
While not red,mended, once you get very comfortable and stable missing a reading is not a big deal for me. A few times last year I went and easy 2 weeks between INR tests, but since I was so stable I did not worry. Now that I am on the bottom end of the range I test every week u til I can figure out and find a new regular dose.

 

[RAS]

tested today and was at 1.7 after taking 80mg of warfarin this past week. The warfarin has been frustrating!

It's not uncommon to have some volatility at first. I left the hospital at 1.8 (target 2.5-3.5) and bounced around between 1.7-3.0 for several months before it stabilized. That was 15+ years ago and before I started home testing. You'll probably get it under control faster since you'll start home testing soon. A consistent daily dose works best. It just takes time to find that ideal dose. You may need to request a variety of different size pills until you find the right total dose per day to stabilize your INR.

 

[pellicle]

To @Estrazz

It's not uncommon to have some volatility at first.

This is true and also its some months away yet but you will find that the dose you need to remain in range will climb a little as you get better.

Nothing to worry about when you see that happening.

 

[Estrazz]

To @Estrazz


This is true and also its some months away yet but you will find that the dose you need to remain in range will climb a little as you get better.

Nothing to worry about when you see that happening.

interesting…..I haven’t heard that yet but it definitely seems to be the case. My dose has went up each week, yet my INR has went down or stayed the same until this last week. My GF and I ate vitamin K a lot before my surgery so we continue to now as well. I have Brussels, broccoli, and asparagus daily. I weigh and track all of my food and did so pre surgery for a few years as well. One thing MyFitnessPal does not offer is amounts of vitamin k. From what I hear from my doc and read on here, one to two servings per day of these veggies should not have a significant impact on my INR.

 

[pellicle]

Hi

interesting…..I haven’t heard that yet but it definitely seems to be the case.

well that's not least because to this point in time I have yet to meet or read about anyone in INR management being well informed or following the literature on best practice.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6287325/
this one is from 2010 ... still the word hasn't got out to the professionals
https://pubmed.ncbi.nlm.nih.gov/19336266/
as early as 1998 people could see "something was different" after cardiac surgery

https://pubmed.ncbi.nlm.nih.gov/9692661/
yet evidently nobody acts on this or disseminates information to clinicians (who by and large seem officious, pompous and disinterested in the patients).

Sad isn't it.

My GF and I ate vitamin K a lot before my surgery so we continue to now as well. I have Brussels, broccoli, and asparagus daily.

excellent and great!! One of the biggest unsupported ideas is that people on VKA (Vitamin K Antagonists) should avoid Vitamin K rich foods. This is unsubstantiated and basically an old wives tale (which is what you'll find a lot of in INR managment clinics)

I weigh and track all of my food and did so pre surgery for a few years as well. One thing MyFitnessPal does not offer is amounts of vitamin k.

my advice is ignore that, don't waste your time attempting to track it and just instead focus on your INR and keep in range. The "intention to treat" is only INR (not the dose you take)

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4998867/

Abstract​

Educational advice is often given to patients starting treatment with vitamin K Antagonists (VKAs). A great emphasis is made on nutritional information. Common belief is that dietary vitamin K intake could counteract the anticoagulant effect by VKAs and for many years, patients have been discouraged to consume vitamin-K-rich foods, such as green leafy vegetables.​

...​

In conclusion, the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K. Based on this, until controlled prospective studies provide firm evidence that dietary vitamin K intake interferes with anticoagulation by VKAs, the putative interaction between food and VKAs should be eliminated from international guidelines.​

[underline mine] ... but don't hold your breath on that last part because these guys are not evidence driven.

From what I hear from my doc and read on here, one to two servings per day of these veggies should not have a significant impact on my INR.

agreed ... you may find this helpful

https://www.valvereplacement.org/th...orrying-about-diet-wrt-inr.877825/post-880281
I recommend you start using that above sheet (or your own) and recording your INR weekly. Anything which gives you a 2 or 3 week moving average will make seeing trends simple. Try to keep your daily dose quite even (sometime alternating doses are convenient, but think 11 - 12 alternations not 5 - 15 alternations

Best Wishes

 

[user 16827]

taking 80mg of warfarin this past week. The warfarin has been frustrating!

Initially it can be frustrating, but soon the mystery of Warfarin will be solved.

As stated keep your daily dose as consistent as possible,

I'm prescribed 3 mg & 1mg pills

There is nothing at all unusual in what you're finding
For reference ; I left hospital on ~ 70 mg/week

later I stabilised on ~ 105mg/week

11 years later I'm ~84mg/week

Self testing is one of the best things you can do and there is a lot of help here if / when you need it.

Best of luck with your onward journey

 

[Keithl]

I have found over last 3 years I went from 6.75 every day to 7.5 and not looking like 8mg as I keep bumping along at 2-2.1 on 8 4 x a week and 7.5 3x a week.

 

[pellicle]

For reference ; I left hospital on ~ 70 mg/week

later I stabilised on ~ 105mg/week

11 years later I'm ~84mg/week

;-)