Self-monitoring INR from the start

[Amy]

An update: I did it! I took my own INR, by myself, thanks to everyone’s tips on lancet size and rubber band tourniquets and warming your hand and everything. Thank you.

Result in just a minute, with no smelly nurse who didn’t wash her hands, no IVs, no two hour wait till I can see it in MyChart; not even a 20-minute drive to the nearest Coumadin clinic. A miracle!

It was 3.3. Now to get some 1 & 2 mg tablets so I can get ready to dial down the dose from 5 mg a day to 3 or 4, in case Monday’s first test at the Coumadin clinic is much higher. Or I could try to lay off the Tylenol a bit more (was actually on 4000 mg every 24 hours at the hospital last week!! Sheesh!) Finally time for a salad, lol.

Thank you everyone for all your help.

 

[Chuck C]

An update: I did it! I took my own INR, by myself, thanks to everyone’s tips on lancet size and rubber band tourniquets and warming your hand and everything. Thank you.

Result in just a minute, with no smelly nurse who didn’t wash her hands, no IVs, no two hour wait till I can see it in MyChart; not even a 20-minute drive to the nearest Coumadin clinic. A miracle!

It was 3.3. Now to get some 1 & 2 mg tablets so I can get ready to dial down the dose from 5 mg a day to 3 or 4, in case Monday’s first test at the Coumadin clinic is much higher. Or I could try to lay off the Tylenol a bit more (was actually on 4000 mg every 24 hours at the hospital last week!! Sheesh!) Finally time for a salad, lol.

Thank you everyone for all your help.

Great! My Coaguchek arrived yesterday. Strips should arrive today or tomorrow. I’ll be so glad to not get needles anymore in my veins. Was starting to look like a junkie

 

[pellicle]

Result in just a minute, with no smelly nurse who didn’t wash her hands, no IVs, no two hour wait till I can see it in MyChart; not even a 20-minute drive to the nearest Coumadin clinic. A miracle!

always a pleasure to see another happy valver ... empowered!!

Or I could try to lay off the Tylenol a bit more (was actually on 4000 mg every 24 hours at the hospital last week!! Sheesh!)

worth mentioning is that paracetamol is known to increase the INR when taken consistently, so just be aware that you may not need to reduce your mg daily dose of warfarin when you come off

https://www.pharmacytimes.com/view/acetaminophen-and-warfarin-the-forgotten-interaction

Tylenol is the best known over-the-counter (OTC) acetaminophen product. It is also a component of well-known prescription drugs such as Darvocet and Percocet. Acetaminophen also is known as paracetamol​

Best Wishes

 

[Amy]

paracetamol is known to increase the INR when taken consistently, so just be aware that you may not need to reduce your mg daily dose of warfarin

Yep, that’s just what I was thinking. Also I’m vegan but was laying off the veggies so I could get out of the hospital. First salad since coming home is tonight - hooray!

 

[Cactus52]

Weekly testing at home had provided so much freedom. I really eat what I want when I want and I can adjust if needed. I haven't been out of range in over 3 months. I got a Coaguchek Xs off eBay along with the testing strips. I now test monthly at my cardios office and he uses a Coaguchek XS as well. Always within .3 or less between the two.

 

[Amy]

Went to the Coumadin clinic and new cardiologist today - what a disaster.

First, he didn’t have any of my records and said he didn’t need any of them.....

They did an ekg right before he came in but he didn’t tell me the results or if he even looked at it.

After messing with his phone he went to come listen to my heart with his stethoscope. I asked if he’d mind using sanitizer first, and he completely lost it. He made a bunch of comments like “are you kidding me?” and “that’s not how you get covid, you know” and “I don’t think this is going to work out” but finally went and got some. (I was still just worried about my incision getting infected...)

He refused to listen to my metoprolol concerns and said I just needed to stay on whatever the surgeon prescribed.

He never asked if I was having symptoms like arrhythmias or anything.

He said my warfarin prescriptions would come through him - so I asked about getting 1 mg and/or 2 mg pills, so if I need to adjust the dose, it won’t be just between 2.5 or 5 mg tablets. He said he’d never been asked that in all his time as a doctor, and I needed to just defer to whatever dose the Coumadin clinical woman ordered... I said I was planning to, but that I’d still likely need 1 or 2 mg pills to be more consistent with the daily dose... He ended by insisting that if I tried to self-monitor my INR, making dose decisions by myself based on ‘my research’, I’d make a mess of things. I said the research actually shows that TTR (time in therapeutic range) with PSM (patient self-management) is at least as good as, if not better than with a Coumadin clinic. He said “That’s not true.”

Somebody send me the link to the paper!!!! I want to fax it to him, though I suppose it’s a lost cause at this point.

I found this, from 2006, but I don’t think this is the one: Error - Cookies Turned Off

So.... I’m still not clear on what my INR range ought to be, though based on ‘my research,’ lol, I’m gonna probably go with 2.5-3.0. It tested at 3.1 today so I guess I’ll stay at 5 mg/day and keep eating salads.

Thank god for this forum and for all of you sharing your experience and useful research and wisdom! Without it I’d be a wreck right now.

 

[Chuck C]

Went to the Coumadin clinic and new cardiologist today - what a disaster.

First, he didn’t have any of my records and said he didn’t need any of them.....

They did an ekg right before he came in but he didn’t tell me the results or if he even looked at it.

After messing with his phone he went to come listen to my heart with his stethoscope. I asked if he’d mind using sanitizer first, and he completely lost it. He made a bunch of comments like “are you kidding me?” and “that’s not how you get covid, you know” and “I don’t think this is going to work out” but finally went and got some. (I was still just worried about my incision getting infected...)

He refused to listen to my metoprolol concerns and said I just needed to stay on whatever the surgeon prescribed.

He never asked if I was having symptoms like arrhythmias or anything.

He said my warfarin prescriptions would come through him - so I asked about getting 1 mg and/or 2 mg pills, so if I need to adjust the dose, it won’t be just between 2.5 or 5 mg tablets. He said he’d never been asked that in all his time as a doctor, and I needed to just defer to whatever dose the Coumadin clinical woman ordered... I said I was planning to, but that I’d still likely need 1 or 2 mg pills to be more consistent with the daily dose... He ended by insisting that if I tried to self-monitor my INR, making dose decisions by myself based on ‘my research’, I’d make a mess of things. I said the research actually shows that TTR (time in therapeutic range) with PSM (patient self-management) is at least as good as, if not better than with a Coumadin clinic. He said “That’s not true.”

Somebody send me the link to the paper!!!! I want to fax it to him, though I suppose it’s a lost cause at this point.

I found this, from 2006, but I don’t think this is the one: Error - Cookies Turned Off

So.... I’m still not clear on what my INR range ought to be, though based on ‘my research,’ lol, I’m gonna probably go with 2.5-3.0. It tested at 3.1 today so I guess I’ll stay at 5 mg/day and keep eating salads.

Thank god for this forum and for all of you sharing your experience and useful research and wisdom! Without it I’d be a wreck right now.

Amy, run don't walk from this cardiologist. He is a total buffoon and will do you more harm than good. I hope that your situation is such that you have choices on who you see. He is ignorant on many levels and does not sound as if he cares about you at all.

After messing with his phone he went to come listen to my heart with his stethoscope. I asked if he’d mind using sanitizer first, and he completely lost it

You are very much like me in this regard. I was very concerned about un-sanitized stethoscopes getting near my incision and would not allow it. I asked them to please listen to my heart with my shirt as a barrier, and told them straight up that I was trying to avoid infection.

 

[Unicusp]

Amy, run don't walk from this cardiologist. He is a total buffoon and will do you more harm than good. I hope that your situation is such that you have choices on who you see. He is ignorant on many levels and does not sound as if he cares about you at all.

Amy, I agree with Chuck. This person is a lost cause. Find a better one. My PCP on his own, prescribed all 1mg tablets stating that it will be much easier for adjusting doses.
I agree that an INR target of 2.5 - 3.0 is probably safest for now.

You may as well sign up with one of the INR monitoring services for the rest of this year as it would be free to you. Would be easier as well.

 

[pellicle]

Somebody send me the link to the paper!!!! I want to fax it to him, though I suppose it’s a lost cause at this point.

firstly I agree with the calls to move away from this "professional"

I doubt he'll listen but if you wish to continue working with him then this may help

https://pubmed.ncbi.nlm.nih.gov/24083884/
and

https://www.aafp.org/afp/2011/0801/p266.html

Main Results: We identified 18 randomized trials (4,723 participants). Pooled estimates showed significant reductions in thromboembolic events (RR = 0.50; 95% confidence interval [CI], 0.36 to 0.69) and all-cause mortality (RR = 0.64; 95% CI, 0.46 to 0.89). This reduction in mortality remained significant after the removal of low-quality studies (RR = 0.65; 95% CI, 0.46 to 0.90). Trials of self-management alone showed significant reductions in thromboembolic events (RR = 0.47; 95% CI, 0.31 to 0.70) and all-cause mortality (RR = 0.55; 95% CI, 0.36 to 0.84); self-monitoring did not (thrombotic events RR = 0.57; 95% CI, 0.32 to 1.00; mortality RR = 0.84; 95% CI, 0.50 to 1.41). Self-monitoring significantly reduced major hemorrhages (RR = 0.56; 95% CI, 0.35 to 0.91), whereas self-management did not (RR = 1.12; 95% CI, 0.78 to 1.61). Twelve trials reported improvements in the percentage of mean INR measurements in the therapeutic range. No heterogeneity was identified in any of these comparisons.​

[pellicle: underline mine - also I'd expect that you'd need to "sell him" on your reliability]

Conclusion: Patient self-management performed at least as well as usual care in maintaining the INR within the target range, without any safety concerns. This treatment modality for the long-term use of warfarin has the potential to change current local and international practice.​

amusingly it has changed international practice , it just hasn't changed the USA (relative to the USA, I'm Australian so USA is international practice to me)

 

[Warrick]

Hi Amy, if you dont have something like a phone app to record your results I can recommend an app called INRlog created by a NZ haemotologist, its really simple for daily reminders and gives you a couple of graphs as well, you can enter your INR results each test-

 

[pekster11]

An update: I did it! I took my own INR, by myself, thanks to everyone’s tips on lancet size and rubber band tourniquets and warming your hand and everything. Thank you.

Result in just a minute, with no smelly nurse who didn’t wash her hands, no IVs, no two hour wait till I can see it in MyChart; not even a 20-minute drive to the nearest Coumadin clinic. A miracle!

It was 3.3. Now to get some 1 & 2 mg tablets so I can get ready to dial down the dose from 5 mg a day to 3 or 4, in case Monday’s first test at the Coumadin clinic is much higher. Or I could try to lay off the Tylenol a bit more (was actually on 4000 mg every 24 hours at the hospital last week!! Sheesh!) Finally time for a salad, lol.

Thank you everyone for all your help.

i have been practising with my coaguchek INRange, and found the elastic band tourniquet to be vital. Without it i was unable to produce a large enough drop of blood. Also, I need to have the softclik set to the maximum setting of 5

 

[pellicle]

i have been practising with my coaguchek INRange, and found the elastic band tourniquet to be vital. Without it i was unable to produce a large enough drop of blood.

I'm happy that people are getting milage out of this

Also, I need to have the softclik set to the maximum setting of 5

are you also lancing on the side? Also, if you aren't using the lances that came with the unit (for instance bought second hand) make sure you have sufficient gauge.

 

[pekster11]

I'm happy that people are getting milage out of this



are you also lancing on the side? Also, if you aren't using the lances that came with the unit (for instance bought second hand) make sure you have sufficient gauge.

Yes, I'm using the side of my finger.
I found using a lower setting, the lancet didnt pierce my skin enough to produce a relatively large drop of blood

 

[ATHENS1964]

Yes, I'm using the side of my finger.
I found using a lower setting, the lancet didnt pierce my skin enough to produce a relatively large drop of blood

Αnd I in the setting 5 sometimes and 5+ .
That's why they have so many settings depending on how hard the skin is.
Also I use the( index-middle-ring fingers)Χ2 hands on both sides so I have 12 measurements ie a piercing on the same side of finger every 3 months.

 

[Warrick]

Also useful is tilting the meter up at the strip end as you apply the drop really helps the capillary action happen in the strip, even a smallish drop generally works whereas if you didnt tilt you would get error 5... not enough blood... bugger when that happens

 

[LondonAndy]

Somebody send me the link to the paper!!!! I want to fax it to him, though I suppose it’s a lost cause at this point.

In addition to the links to papers that Pellicle provided, the UK's regulator published a report in 2014 that concluded significantly better outcomes for home-testers too.

Whilst I agree with comments about not upsetting the clinic too much at the start, as they have their uses, personally got my own meter within weeks of surgery and after doing some research here and other sites I almost secretly manage my own dose. As Pellicle said, here home testing is encouraged and supported. I test weekly, and email a result once very 4 to 8 weeks to the clinic (frequency depends on if I am out of range) for them to send an official INR report back to me and my doctor. I have to show this when collecting Warfarin from a pharmacy.

As somebody of working age, I got the meter mostly:

• For the convenience of being able to test at home (or wherever I am) in minutes rather than the hassle of travelling to a clinic for less frequent tests
• To better understand what changes in diet or health affect my INR (eg a cold has the biggest impact, and usually before symptoms! Alcohol has comparatively little effect)
• To be able to go on holidays when I want, and not be tied to a clinic, with a convenient hand held device in my take-on luggage
• Confident that the machine gave similar results to a lab test (though this doesn't work for a few people)
• To take responsibility for my health, and try and minimise the risk of a stroke or thrombosis

Fortunately, apart from having to pay about $465 for the machine, all my supplies are on free prescription, but if I needed to buy strips or lancets etc I can order directly from Roche at very reasonable prices. Eg under $5 per test strip, and under $2.50 for about a year's supply of lancets. Here we get 1, 3 and 5mg Warfarin tablets so that it is easy to make up whatever dose is needed.

Your Cardiologist sounds a real arrogant and ignorant ****. Change to another urgently.

 

[pellicle]

Always within .3 or less between the two

interesting that there is as much as 0.3 diff between two machines. I've never done this so that's interesting.

Can I ask

• did you do both tests (or did say the nurse do you on his)
• was it the same finger?
• were there differences in time between lance and application?

Thanks

 

[Cactus52]

interesting that there is as much as 0.3 diff between two machines. I've never done this so that's interesting.

Can I ask

• did you do both tests (or did say the nurse do you on his)
• was it the same finger?
• were there differences in time between lance and application?

Thanks

No the way I did it is probably not very scientific. I checked it at home prior to going up to get it checked. I did check it on the opposite hand 1-2 hours prior to the check at the docs. The nurse always does it at the office.

 

[Protimenow]

When I was testing at UCLA - using my meter to check that my INR was in range before going to their 'coumadin clinic', their algorithm (because my INR was always in range), allowed me to extend the time between tests to up to 2 months. Of course, because I had my own meter, I still tested weekly.

Testing algorithms evolve with time - at least, in the case of the ridiculous advice that I received because my INR was always in range - I hope they have.

 

[Protimenow]

According to an old report that I cited years ago, a Duke University Clinic said that it only takes 10 days with an INR below 2 to form a clot. For that reason, I want to keep testing weekly. What's the use of pushing the risk envelope out another four days?

To be fair, as long as I've been in range, I've gone as long as 10 days or up to two weeks between testing, and my results stayed in range. If you're taking your usual dose of warfarin daily, you'll probably stay in range or close enough to stay out of danger for clots or bleeding events. But it's still a good idea to test weekly.

I go for blood draws every few months - although the clinic that I use - that thinks that they're managing this stuff (and also know that I self-test and self-manage) wants me to get a blood draw every month and will contact me if it goes too far between blood draws.

Before I got stuck going to this clinic before I could get a new prescription, I would go, perhaps, once or twice a year.

I'm now doing parallel tests between my Coag-Sense and CoaguChek XS meter. There's still a difference between them as my INR gets higher. I don't like it. But as long as both tests are within range (even if CoaguChek is slightly above range), it doesn't really bother me. I know, at least, that my INR hasn't dropped below 2.