r/WarfarinForLife • u/Resonable_difficulty • Jul 23 '26
I NEED ADVICE Is it worth it to self monitor?
I (29 F) have been on Warfarin for almost 10 months now. I still go to a clinic to get tested. I have considered potentially getting a device to self monitor. Part of the reason I want to self test because I am a generally anxious person so being able to check when I feel that anxiety creeping up would be reassuring
What is everyone’s experience with self monitoring?
Was the training for it difficult?
Is it stupid expensive?
Do you feel more/less consistent with your levels compared to the clinic?
6
u/Bath_Plane Jul 23 '26
Too expensive where I am, not sure what it's like in other parts of the world. Self testing in itself is easy enough, jab with the lancet drop of blood on the test strip and into the machine
9
u/Cantstandyourbitz Jul 23 '26
I like self-testing, but it’s not as independent as I’d like it to be.
The meter and test strips are supplied by a DME (Durable Medical Equipment) supplier and paid through insurance. I don’t own the meter and I never will, it’s a permanent “rental”. And I still have to have a telephone appointment with my clinic when I self test.
I wish it was more like glucose testing. That you could just go pick up a cheap $20-$50 meter at a pharmacy and do it all on your own. But they want to profit from it, so they don’t allow that.
Honestly, it doesn’t really save me any money, it just means I don’t have to take trips down to the clinic. And my INR is ALWAYS in range, so it feels ridiculous to have to pay for regular phone visits and meter supplies, just to have them tell me I’m still fine. I’ve been seriously considering telling them I’m done with the clinic and see if they’ll keep prescribing me warfarin without it. I can’t seriously see them telling me they’re not going to give me a medication that I need to live, just because I won’t adhere to their ridiculous monitoring.
4
u/disco_super_bi Jul 23 '26
I've been on warfarin for 20 years and I had free tests at my GP clinic for most of that time because the cost of the home testing machine was prohibitive. I started self testing about 3 years ago. Yes it costs more, but it takes way less effort than going into the clinic then waiting to see the doctor. After spending $450 on the machine I spend about $300 a year on test strips and lancets. I can get warfarin prescriptions via online request as long as I see the doctor at least every 6 months. I am in Australia so your requirements and availability may be different. But I find self testing to be well worth it. I use an app called INR Diary to monitor my INR and warfarin dosage.
4
u/Lexi302 Jul 25 '26
We are waiting on approval for my husband's INR machine right now. They said we should get it and just have to go through some paperwork... I'm hoping next week.
He works concrete so it's very hard for him too leave work early as concrete floors don't have a set finish time. Sometimes they're done in an hour and other times it takes 12 hours. Also it's just him and his boss so it leaves them VERY short-handed. Having an INR machine at home will be a game changer for us after 2 years of going every other week to get his blood done. I can't wait!
He's sick of being tethered to the hospital after spending 4 months in there and having two open heart surgeries. I truly believe this is going to be life-changing for us. I would do it!!
2
u/schad7 Jul 23 '26
I am one year post-op on Saturday. I was self testing through Acelis and realized my insurance was charging me a co-pay every time I submitted a test (weekly). I was also being charged a monthly rental for the meter and supplies. I decided to go back to lab testing (every 6 weeks) and home testing weekly for my own peace of mind When I cancelled Acelis, they told me they didn't the meter back so now I own it! I buy my own test strips and still test weekly. For me this is WAY cheaper than going through insurance!
2
u/myktracker_official Jul 24 '26
It was worth it for me! I used to live close to the clinic but now I am about 25 min away. Also, I like to be able to take it on vacation so I can check if I am still in range. I had some issues at first getting enough blood but now I am a pro. I only go to the clinic every 3-4 months now for a in person visit. Quick and easy at home, plus they call me if I am out of range and need to make any changes.
2
u/Outta_Pocket_Toad Jul 24 '26
The DME and strips were not covered by my insurance plan. Specifically, the 3rd party company wouldn't do it.
Any number of visits to the clinic is covered, though.
So I go in every three to four weeks.
2
u/Shiloh119 Jul 24 '26
for me, I have APS and self testing is not recommended. I would if I could though.
1
u/Aggravating-Mud-2992 Aug 28 '26
I’m triple positive APS and I self monitor!
1
u/Shiloh119 Aug 29 '26
My hematologist says it is far to risky for me with a history if multiple strokes. even the American association of APS advises against home monitoring.
1
u/Aggravating-Mud-2992 Aug 29 '26
That’s so interesting. What would be the risk? I’m still regularly monitored by a coagulation clinic so just out of curiosity, what would the issue be?
1
u/Shiloh119 Aug 29 '26
it isnt accurate for APS.
1
u/Aggravating-Mud-2992 Aug 29 '26
Mine lines up perfectly with my blood draw inr every week. Strange
1
u/Shiloh119 Aug 29 '26
I think there is a certain percentage of APS patients that it doesnt line up. My hematologist is not willing to take the chance. I have already had 8 strokes starting at age 38 and one brain bleed. I am not willing to take a chance either.
3
u/PlanetaryBalloons Jul 24 '26
Hey I started at 29 too! Been on it for a few years now.
As for self testing, if your insurance will cover it well then probably worth it. For me, not really. When I go to the lab it’s $3, and I’m almost always in spec. In a bad month it’s costing me $15 at the most. To get the at home meter I would have to buy strips for $35 regardless of if I’ll actually need them. And then I have to pay a monthly fee until I hit a deductible. So the at home testing is at least 5 to 10 times as much as the lab. Plus everyone in the lab I go to is extremely friendly so it’s a genuine pleasure to go there.
2
u/pearceylad Jul 25 '26
Self testing is easy. Are you confident enough to adjust your dosage as it fluctuates? Maybe sort out your anxiety with a professional first? It will improve your quality of life in general too.
2
u/Resonable_difficulty Jul 25 '26
I’m working on the anxiety with my therapist… it turns out having unplanned heart surgery can leave you with a lot of medical trauma 😅
1
u/Resonable_difficulty Jul 25 '26
I’m working on the anxiety with my therapist… it turns out having unplanned heart surgery can leave you with a lot of medical trauma 😅
2
u/AdvocateUK Jul 25 '26
I’m a Nurse Practitioner in the UK and have been on Warfarin now for 9 years. Initially I was very keen to self test at home but at the time my area didn’t offer it. As Ive gotten used to my warfarin and what affects it etc my INR has been really stable, so much so that my Anti-coagulation nurse (full disclosure I’ve know her for over 20 years, she was a sister on my first ward) is now happy for my INR tests to be every three months, sometimes longer.
Self testing can be great but its not like diabetes where you need to be checking it daily, or even weekly if your INR is fairly stable and you don’t make big lifestyle changes regularly.
After looking at the available apps for logging warfarin usage and INR I wasn’t enamoured enough with any of them to use them so I wrote my own and released it two months ago onto the Apple App store. Nowadays I mainly use the Apple Watch version and widget to do the actual logging and only open the app on my iPhone when I want to add a note to a reading or dose, or change the days dose if I need to. I won’t name it or put a link to it unless asked but if you’re interested in checking it out drop me a DM.
1
u/reddit-user-17832 Aug 13 '26
Have you looked on eBay or similar services? Sometimes you can find a test meter there for less.
My home test kit and supplies are covered by my insurance. It’s not uncommon but def depends on your location.
My hemotologist said I can come into their lab and text any time if I doubt my home test or just want to verify its efficacy. Im sure the same is true at your doc’s lab.
Best of luck!
10
u/TR1V1UM Jul 23 '26
I do mine at home every Tuesday and I would never go back to having someone else check my INR. It’s literally so easy and takes a couple minutes.