Never ending INR issues- warning LONG post

[sassyspy]

I've been away from this forum for such a long time, life got in the way of my computer time. Recently my INR difficulties are so extreme, and then I remembered the wealth of knowledge to be found here. I self test with a coaguchek, and also occasionally go to the Coumadin clinic I guess just to validate that I'm ok.
But lately that's definitely not been the case. I've attached a screen shot so you can see what I mean.
I don't know what to do. I don't use any alcohol, I think my diet is pretty stable (not always healthy, but stable). I don't know why my INR is like this. When it goes as high as you see here, the medical response is hospitalize me, give me transfusions (usually anemic when this occurs) and vitamin k injection to bring it down immediately.
It's because I'm sick of going to the hospital, that I've quit sharing my results with doctor or clinic. My doctor is totally INR ignorant anyway, so I'm not surprised even she sends me to the E R.
I surprisingly never have any problems with bleeding, but I'm also very careful. I fell out of bed the other night, hence the bruise photo.
I am currently taking only 1.5 mg of warfarin daily, and yesterday once again my INR was higher than my machine can read.
I'm so tired of it all. I've been dealing with this crap for over 6 years now, it has had such a negative impact on my previously cheerful, happy personality. I don't even know me anymore.
I'm not even sure what I'm looking for here, I know you aren't doctors and most are not comfortable giving advice. Maybe I just need a place to rant and release my misery?
Anyway thanks for putting up with it.

 

[pellicle]

Please PM me and lets discuss if I can help you

 

[Protimenow]

My first thought is that you may be taking a generic that can't be regulated by your body. Perhaps the pharmacy switched manufacturers without letting you know.

I was given Jantoven(I think) - a generic warfarin with a different name and from a different manufacturer than the generic that worked for me.

I was unable to control my INR with this new drug.

See if you can get the patented Coumadin, and see if this helps. You have your own meter, so you should be able to test a few days after you switch manufacturers and start with the new batch.

Inability to control INR sounds, to me, like you're just taking the wrong generic.

If you can, perhaps you can remember who made your warfarin before things went haywire.

I hope this helps.

(Your post wasn't very long)

 

[bosshog]

I don't know if this will help you, but I started taking a 100mg vit K2 supplement daily several months ago. My INR was jumping all over the place prior to this. My clinic asked if I would be willing to try this as there were some studies done several years ago. Google this and you should find some info.

The theory behind it is that the daily dose of K2 causes a smaller change of INR due to dietary intake of K2. With a consistent level of K2 (700mg weekly) you see a smaller percentage increase when you eat a salad or something than you would with no K2 in your system.

Since I started this my INR has been quite consistent between 2 and 3 . Before this I would jump all the way to 8 once in a while.

 

[bosshog]

.

 

[LondonAndy]

Wow - is that graph with a consistent dose of Warfarin? Amazing variation, and clearly very alarming. No sign of an infection? (Eg do you have a temperature?) Others here will be better placed to offer useful advice than me, but I can understand your worry and desire to find a solution.

 

[dick0236]

I am currently taking only 1.5 mg of warfarin daily, and yesterday once again my INR was higher than my machine can read.

WOW!! You may have a meter problem, drug issue or INR issue......but I'd find a doctor real quick that can get a handle on that kind of erratic and HI INR..........especially on 1.5mg.

 

[Warrick]

Have they checked for other blood disorders like protein S deficiency?
Ive read some people struggle with a stable inr big time with that.

 

[sassyspy]

Thank you for your responses.
Protimenow, that's a good point. They DID change supplier awhile back, and I only noticed because the shape of the pill changed, they certainly didn't tell me. And I can't remember for sure, but it may well have coincided with my INR going whacko.So that's definitely worth checking out, and I will do.

I do have a vitamin k supplement I have used in the past to bring it down more quickly than a warfarin dosage change would accomplish. It's Super K, with 1500mcg of K1 and 1000mcg of K2. It's all I could find over the counter locally. I took 2 yesterday and have gone from over 8 down to 4.5 now. I know that works out to 1.5 and 1.0 mg respectively of the vitamin k, but when they gave me an injection of 5mg of K in the hospital, I dropped to 1.5 INR and it took forever to get it back up again. I'm way more scared of a low INR than a high one!

So taking your suggestions to heart (no pun intended!) will see what develops over the next couple days. To be honest, it's already made more sense and helped more than all the "expert medical" feedback I've gotten.

 

[Warrick]

Good on you sassyspy with the vit k, Iv dropped INR with loading vit k like that too when its gone over 4.0, works well .

 

[Protimenow]

That second dose of SuperK will certainly drop the INR down - perhaps a bit too far down.

If possible, I'd see if I can change suppliers of warfarin right away - just in case that was causing the management problem - and see if you can keep your INR in range.

If THAT doesn't help, you may want to look into other possible reasons for your INR to climb like it did.

I agree - I'm more concerned with an INR in the 1-2 range than I am with an INR between 4-6. But neither should be persistent, and both should be corrected pretty quickly.

 

[pellicle]

Inability to control INR sounds, to me, like you're just taking the wrong generic.

this is my suspicion too

 

[Freddie]

FWIW: Have you looked into your test strips? They may have been on the recall list. There was NO recall here in Canada and I had received 2 different (6 month supply each) of strips from my pharmacist. After some searching on my own, I contacted Roche and they sent me a test kit to check my meter. My meter was fine and I sent my bad strips to Roche. In return Roche sent me 24 new test strips and said they'd send me a new meter if it had tested bad.

 

[Protimenow]

Freddie - you may have something there. When I hear about high INRs, I often suggest that these be verified by a lab (or vice versa). I've had labs report high values--and I test on my meter, and sometimes different labs. A few months ago, a lab reported 5.1 - I tested on two meters - 2.8 and 3.0. The meters had been consistently reporting an INR of around 2.8. Two other labs reported 3.5 and 3.6.

A month ago, another lab reported 3.88 -- my meters said 2.8. I told the doctor that the lab was wrong.

If you get a strange value (the CoaguChek XS strips that were recalled gave abnormally high results), it makes sense to use another set of strips, perhaps a different meter, or get some actual blood work to check the accuracy of the meter.

(And, as I've suggested before, it could be that your body just doesn't work well with a different generic).

 

[Duffey]

FWIW: Have you looked into your test strips? They may have been on the recall list. There was NO recall here in Canada and I had received 2 different (6 month supply each) of strips from my pharmacist. After some searching on my own, I contacted Roche and they sent me a test kit to check my meter. My meter was fine and I sent my bad strips to Roche. In return Roche sent me 24 new test strips and said they'd send me a new meter if it had tested bad.

Hey Fred!

 

[mecretired]

I certainly hope you find the problem and get your inr straightened out. I can’t imagine an inr that high on 1.5 mg. I’ve always taken 7-9 mg—sometimes 10 for 9 years now. I take Jantoven and seem to do well with it. I can imagine how stressed you are and maybe a little depressed. So God bless.

 

[tom in MO]

Amazing how much poor advice and misinformation is in this one thread.

Sassyspy, swings that wild, do need professional treatment.

 

[Protimenow]

The earlier suggestions -- to validate the readings and make sure that the strips weren't part of a recall, or have labs run when a strange result is found, and perhaps changing the manufacturer may be good first steps.

If the accuracy of the meter's results are confirmed by tests with other meters or lab blood work demonstrates that this truly is a problem; and if a change in source of warfarin doesn't fix it, involving a 'professional' is certainly an option.

Another option is to work with Pellicle to see if you can figure out the correct dosage. (I don't think that I've EVER taken just 1.5 mg after my AVR.

Or, alternatively, still try to confirm that your meter's results are accurate and that you're not using recalled strips. (Also - according to one of the people on this site, call Roche, explain the problem - they may send you something to use to test the meter, and, if you're using recalled strips, they may replace them, they may replace your meter - this may help resolve some of the troubling, possibly erroneous, readings).

(It may be as simple as using recalled strips to test your blood. You can check the lot numbers of the recalled strips online).

 

[Warrick]

Well I think they are getting professional treatment... unless you get blood transfusions from the corner dairy these days...

 

[pellicle]

Amazing how much poor advice and misinformation is in this one thread.

so why don't you lay on us the "proper information" and "good advice" instead of just slinging negative comments from the balcony?

Perhaps even clear up some of those "poor advices" and "misinformations"