Reinforcing the need for weekly testing

[Protimenow]

As sort of a self-proclaimed 'expert' at managing my INR, I'm somewhat embarrassed to admit that I don't always take my weekly testing advice. I've recorded my INR regularly for more than 7 years. I've gone through a few meters until I found the one that I preferred (and that I put my trust into).

I wound up with a cascade of events that underline the need for weekly self-testing - if I had trusted the anticoagulation clinics and taken their 'once monthly' advice, I could be in REAL TROUBLE.

On August 31, nearly two weeks ago, my INR was 2.8.

I started taking Hyaluronic Acid, roughly 100 mg morning and night. There was a report of an interaction that can cause an INCREASE in INR for people who also take Warfarin. I tried, and failed, to test on Friday night (I'm not sure why the testing failed, other than operator error. I figured that it was safe to wait until the next day to retest). Yesterday, I tested and got a 1.4. SCARY. I tested with a CoaguChek XS and got the same value. I followed a published protocol for recovering from a low INR (Ball State Clinic) and took 1.5 times my usual dose. I had two syringes of Lovenox and bridged with one last night, just to reduce the risk of a negative event.

I just tested and got a 1.5 -- still too low for my comfort. I've taken the increased dose tonight, and hope that the INR when I check tomorrow will be back in range. Once there, I may have to retitrate to get my dosing in line with the desired range. My INR was probably not out of range for more than a few days (I hope).

My point here is that weekly testing is very important. If your INR changes between tests (and if you test monthly, which is what many doctors and clinics recommend), it's possible that subtle changes (like adding a supplement or skipping a vitamin that you regularly take) can have signigicant impact on your INR, and that these may go completely undetected by the long time between tests. If I didn't self-test, and continued as I was, I may not have been here in a week or two.

I trust my Coag-Sense meter (in a pinch, I'll also use the CoaguChek XS, like I did last night, just to confirm that the results were close).

If you don't have a meter - get one. Once you have the meter, test weekly -- even if your results are ALWAYS consistent.

Personally, I'll kick myself if I DON'T test weekly from now until I die (or until I'm no longer physically ABLE to test). I don't want to leave my wife and dog husbandless/fatherless.

Anyway - just my own personal anecdote and advice, FWIW

 

[pellicle]

Hi

I think of you more as an evangelist

Personally, I'll kick myself if I DON'T test weekly from now until I die (or until I'm no longer physically ABLE to test).

better yet, I'll come overand kick your arse

I don't want to leave my wife and dog husbandless/fatherless.

have you married your dog or sired it?

history is repleat with such tales

(apology in advance to Steve's keyboard)

 

[Agian]

Great advice; I'll take it.
Live and learn.
What does hyaluronic acid do?

 

[Protimenow]

Pellicle: No, the order of things was fairly clear - leave my wife husbandless and my dog fatherless (although, in reality, it was some other mutts who were involved in creating my strange dog).
Agian -- Hyaluronic acid is, I've seen, also referred to as chondroitin sulfate. A lot of people take glucosamine and chondroitin.
Hyaluronic Acid (HLA) is interesting stuff - I get it as a fine powder. It's the stuff that collagen is made from. HLA has been used in skin creams, but taken internally, it helps the skin from inside out and restores moisture to your joints.

It's rather difficult to take if you just want to put a small but under the tongue - but it DOES dissolve eventually. I've read where a small amount can help keep a person's throat and mouth moist during sleep because it coats the surface and attracts water.

It can be made in various concentrations - as a thick, gelatinous (sort of) gel that can go straight onto the skin, or can be mixed with other things (like DMAE) that are supposed to also be good for the skin. I take a dab of the thin liquid (1 teaspoon of powder to .5 liter of water) and dab it on my face after shaving and, sometimes, before I go to bed. It may actually be helping with moisture.

I've seen a number of warnings that HLA will INCREASE the INR of people taking warfarin. I didn't find this to be the case.

However, it's a good idea to test INR frequently when you start something new like this. I'm not entirely sure what caused my INR to drop, but I'm glad that I caught it when I did. I test daily now. I'll probably have to do some more daily testing to be sure that I haven't overcompensated for my low INR.

Having a meter that I trust, and keeping the information in a spreadsheet (and on the cloud) helps me to keep track of this.

In a time when most people on warfarin can probably afford meters and strips, the idea of monthly testing makes little sense to me - aside from comparing meter results to blood draws.

 

[Protimenow]

Pellicle - you're welcome to come over and kick me. I've done enough that I know I deserve a good arse kicking. While my INR is still low, it's a good time to do this, because I won't show as much bruising as I would if my INR was back in range.

 

[pellicle]

Pellicle: No, the order of things was fairly clear - leave my wife husbandless and my dog fatherless

just being a wise guy mate ... figured we know each other well enough to do that ;-)

I will be over there in 2017 I reckon ... hopefully we can just have a beer and you've not skipped any tests for a month or 2

 

[Agian]

a thick, gelatinous (sort of) gel that can go straight onto the skin, or can be mixed with other things (like DMAE) that are supposed to also be good for the skin.

You must have soft hands. Does it help strengthen the nails?

 

[Protimenow]

I'm not sure about the nails - I think that it's supposed to do that, too, but it may take a few months to see any result in the nails. As far as hands - I pour a teaspoonful into the palm of one hand then spread it on my face. I don't think that it's in my palm long enough to have much of an effect.

 

[Jamieann]

Thanks for posting this. I have been on warfarin since the beginning of August (AVR with tissue valve on 4/1/16 but stroke from clot on 7/26/16). At first my INR was all over the place, anywhere from 1.8 to 5.6. I've been going to the lab to test weekly. The last couple weeks my INR has been more stable (around 2.5-3) so my cardiologist said I don't have to get it checked for another 2-3 weeks... not sure I feel comfortable with that though. After reading this it really makes me think I need to keep going every week! Even though I don't like getting blood drawn, at least it only costs me $0.39 for each test since I've already hit my deductible.

 

[Protimenow]

Jamieann:
Personally, I wouldn't take that cardiologist's advice. If your INR has only been stable for just a few weeks, and it was 'all over the place' previously, I wouldn't be comfortable waiting to find out after 2-3 weeks that it's out of range. With a history of a stroke because of clotting, this seems to make more frequent testing even more important. If it only costs 39 cents for a blood draw, I'd get the test done weekly -- if your INR is out of range, I may even have it drawn more often than that.

In these days when people can get their own meters and self-test, there's little reason to delay testing weeks or months - it only takes a week (or so) to have a stroke - if you get tested every 3 weeks, you won't know what's happening in the meantime. If your doctor is upset that you are testing TOO often, you might consider finding another cardiologist.

Plus - if you've met your deductible, you may want to see if your insurance will cover the cost of a meter so that you can also test at home.

 

[Protimenow]

This is an update to my original issue. I've increased my dosage, and expected that my INR would also rise after a few days on the higher dosage. It did - sort of. It went from a 1.4 to a 1.9 after four days. The lab results would probably show about 2.1 or so because this lab usually gives results that are slightly above those from my meter.

I've been testing daily, somewhat anxiously awaiting results that are back in range.

I'm not sure WHAT made my INR drop. I've checked the medications that I take, and they aren't supposed to affect clotting.

The other day, my anticoagulation clinic called (they KNOW that I also self-test), and told me that if I didn't have a blood draw by today (Friday), they would drop me from the service. I use them, primarily, for blood tests. Because I'm having an issue getting my INR more into the middle of my desired range, perhaps they'll have some ideas. Perhaps with a prescription for Coumadin (and not a generic), I can try Coumadin and see if this allows me to regulate my INR and find a daily dose that keeps me in range.

It's been frustrating - and a bit of a concern. My cardiologist, who I saw on Monday (a six month regular visit) made me feel a bit less anxious about my INR when he told me that my cardiac cath showed nothing on my valves - I probably don't have any clots forming now (but that's no guarantee).

In any case, I'll maintain a dose that is higher than usual, and probably see a slow increase in INR, hoping that it will eventually stabilize.

For me, daily testing was important. I plan to keep testing weekly once I'm comfortable that my INR is in range.

 

[pellicle]

Jamieann , I would side strongly with Protimenow on this
taking the old school approach of "monthly testing - cos I'm in range now" is just setting you up for being one of the bad stats on the harm that can come to you on warfarin. Do the smart thing for yourself and test weekly, self test with a POC machine because blood draws are a pain and will eventually do harm to your veins over time.

The argument of "I'm in range" is about as good as saying "I never look in the rear view mirror before turning because it was clear every other time, and there is not much traffic in my town at this time of night."

 

[Agian]

Jamieann, I'm a newbie to all this. But, testing your own INR is a breeze. You have nothing to lose by testing weekly and lots to gain. You'll be in control. Get your own machine, like I did.

 

[Protimenow]

Julieann - Agian is right. Once you get through the learning curve, and perhaps overcome the issue with 'lancing' your finger, self-testing is a fairly trivial thing. Be sure to keep a record of your INR, dosage, and possible factors that may have had an impact on your INR.

For me, I keep a spreadsheet (with backup) that goes back to April 2009, when I first started self-testing.

---

Back to the original subject of this post:

After testing early AM on Septermber 11 revealed an INR of 1.4 (11 days earlier, it was 2.8), I was concerned at how low the INR was. I increased my dosage of Warfarin, and began testing to see the effects of increased dosing. I've tested almost every day. Even a jump from 7.5 mg to 10 mg STILL has my INR at 2.3 (a blood draw would probably show 2.5 - bottom of range). I'll continue at 10 mg/day and keep monitoring to make sure that it doesn't somehow swing in the wrong direction and put my INR nearer to 4 than I'd like it to be.

There's a complication, though. Yesterday, I took Amoxicillin before some dental work. Now, I'm starting other antibiotics for a sinus infection and possible bronchitis. These will probably cause my INR to elevate, because they'll kill some of my gut bacteria that is involved in handling the warfarin. I'll probably have to readjust the warfarin dose DOWNWARD to accommodate for the effect of the antibiotic on my INR.

IF I DIDN'T HAVE MY OWN METER, AND COULDN'T SELF-TEST, I WOULDN'T BE ABLE TO MONITOR THE CHANGES IN MY INR RESULTING FROM AN INCREASED DOSE OF WARFARIN OR THE EFFECTS OF THE ANTIBIOTIC.

My advice to everyone on Warfarin: Get a meter. Test. Don't rely on monthly blood draws.

 

[LondonAndy]

... There's a complication, though. Yesterday, I took Amoxicillin before some dental work. Now, I'm starting other antibiotics for a sinus infection and possible bronchitis. These will probably cause my INR to elevate, because they'll kill some of my gut bacteria that is involved in handling the warfarin. I'll probably have to readjust the warfarin dose DOWNWARD to accommodate for the effect of the antibiotic on my INR.

Not sure if you saw my post on another thread Protimenow, but I wonder if your drop in INR is down to the bronchitis/sinus infection - I find even a cold has a fairly significant effect on my INR (downwards)

IF I DIDN'T HAVE MY OWN METER, AND COULDN'T SELF-TEST, I WOULDN'T BE ABLE TO MONITOR THE CHANGES IN MY INR RESULTING FROM AN INCREASED DOSE OF WARFARIN OR THE EFFECTS OF THE ANTIBIOTIC.

My advice to everyone on Warfarin: Get a meter. Test. Don't rely on monthly blood draws.

Amen! If there was a church to worship at the altar of self testing, I would be in the front row, singing along to the hymns heartily, probably with Pellicle and you (unless you are the vicar ...) !

 

[Protimenow]

Actually, we may have to make it interdenominational, so we can reach an even broader audience.

Thanks for the suggestion about Bronchitis/Sinusitis possibly causing a drop in INR. I'm at a partial loss to explain how it went from 2.8 to 1.4 in 11 days - and even though I've made a dosing increase that is higher than most clinics would recommend, I'm still only at 2.4 12 days after making a significant increase in my dose. I'll test in a few days to see if the antibiotic has raised my INR, and once the antibiotic is out of my system, try to bring my INR into the middle of my range.

I know how my anticoagulation clinic would have handled this (as I was told when a blood draw revealed a 2.1) - increase weekly dose and test again in two weeks. RIGHT. I'm glad I have my own meter.

 

[Agian]

Actually, we may have to make it interdenominational, so we can reach an even broader audience.

Count me in!

Amoxycillin actually decreased my INR, even though they say it increases it.

 

[Protimenow]

This is one of the reasons that I'm glad to have my own meter. I'll see what the amoxicillin does to my INR and adjust accordingly. This couldn't be done with monthly blood draws.

It may be of some comfort to know that Hillary Clinton is taking Coumadin - I'm considering writing to her to urge that some attention be given to making monitoring more readily available to anyone taking coumadin -- make machines affordable and available to those who CAN self-test, asking for return of meters that were bought by Medicare for persons who have subsequently died (so that they can be redistributed to those who need it, rather than being the source of a few bucks to people who sold of granny's meter), perhaps encouraging pharmacies to do INR testing, etc., and still 'expecting' doctors or trained specialists to deal with anticoagulation recommendations.

Perhaps a new president may have some concern about anticoagulation management for the masses who take warfarin.

 

[Eva]

I take Hyaluronic Acid 200 mg...my doctor was impressed when I asked for his approval! It really had eased my pain in my knees! I've gone to physical therapy for two years, to no avail! This is wonderful! I love it more than any other joint support pills! It works...
My doctor said it has the same gelatin ingredient that they inject into painful knees. It took two months befor I felt real benefit. Hallelujah! I never thought I would be able to improve like this. I used to have very crucial pain at night in my whole legs, could not get up from bed, painful going the stairs down or up!
Thanks to my next door neighbor who recommend d it...I never heard of it and may not have tried it on my own. My neighbor is a care giver to elderlies, and she had seen its benefits on their joints! I feel I have an angel next door.

 

[Jamey T]

Thanks Protimenow, I have been lax about testing lately. I am testing only every two to three weeks, and there is no good excuse other than laziness. As far as amoxicillin, I have never noticed a difference, but as usual, your mileage may vary.

Thanks for the kick in the pants, I will test weekly, since I own my meters, and buy my own strips.