Will my INR ever stabilize?

[Robbyn]

It has been 3 years since I had my Mitral valve replaced. I am still going to have blood drawn every week to have my INR tested. I live in Canada, so there is no charge to me. My Coumadin is managed by a anticoagulation clinic in a major teaching hospital. My INR seems to be very difficult to regulate. My Coumadin dosage has gradually gone up from 6 mgs daily this time last year to 12mgs daily.

I do realize the dosage is irrelevant, but it doesn't want to stabilize. My INR was 1.8 yesterday.They keep increasing the dosage and it still hardly increases. Does anyone else have this problem?

I guess I just need to vent, I would like to be able to go away on holiday perhaps for 2-3 weeks, and just don't see how I can. I was thinking of overseas travel in the future.

TIA,
Robbyn

 

[geebee]

Robbyn,

Have you been steadily increasing your activity over the 3 years as well? If so, your INR will not keep up on the same dose until your activity level becomes consistent.

1.8 is an INR to be worried about with a MVR. How much are they increasing your dose at a time?

 

[Karlynn]

This can be very frustrating.

Has your activity level increased in the last year?

How much are they increasing your dosage by and are they using your weekly Coumadin total to do that?

Does the Coumadin Clinic say anything about you being on too much Coumadin? I know you know the amount doesn't matter - but make sure they aren't being under aggressive in their increases because they don't want you on "too much".

Have you had a complete physical lately with full blood workup?

Have you changed your diet, such as eating foods and drinks prepackaged for weight loss? (These can contain hidden amounts of Vit. K, mainly from soy protein use.)

Have you started new meds?

I'm asking these questions to see if anything rings a bell. Most people really aren't truly "unstable". It often times has to do with unnoticed changes in lifestyle (activity and food) or managers that try to micro manage doses.

So you were 1.8 this last time - and your weekly dose went from what to what?

 

[Robbyn]

Gina,

This is my INR for the past 4 weeks. 1.7 - 2.0 - 2.4 - 1.8.
For example she has me take 15 mgs for two days then 11mgs for the rest of the week. Week before 15 mgs for two days then 11.5 for the rest of the week. I went yesterday for testing, so this week, 15 mgs for 2 days then 12 mgs daily and retest on Friday. So it will be twice this week.

Karlynn,
The clinic has no concern on taking too much Coumadin. You need what you need.

I have blood test monthly for another disease I have so I am closely watched for other things.

No new meds. I eat a salad 2 times a week. I exercise and eat alot of veggies and fruit but have done so for the past year.

Thanks for your help, I just feel frustrated, I guess I just need to suck it up and that's the way it is.

 

[geebee]

Robbyn,

She is not increasing you enough. When you went from 15x2 +11x5 to 15x2 +11.5x5, the increase is only about 3%. With an INR around 2.0, I would have increased my weekly dose by 15-20%. When she is increasing only 3%/ week, it is going to take some time to get in range.

Is there any way to kindly ask her to increase the increas?

 

[Ross]

First off, if they test you twice this week with the new change, it's not going to be fully reflected, therefor pretty much useless. They should wait a full week before testing again. At any rate, they aren't being aggressive enough as geebee pointed out. 10% increases will get you there, not 3%.

I think your going to find that it takes about 14mg per day to keep you in range.

 

[kbheart]

I'm facing a similar problem. I was low 2 weeks ago (1.7) and the nurse wanted to increase my weekly total by only 7%. I disregarded her advice and increased it by 13%. This week I was still low (1.8). Thank goodness I had ignored her previous advice or it probably would have dropped even lower. This week she was more aggressive and wanted to increase it 12% higher than what I did the past 2 weeks, but I'm tempted to ignore her again and increase it by at least 15%. The nurses are so hesistant to increase the doses. It's very frustrating!! I hate to ignore their recommendations but I don't want to have a stroke! I hope we both get stable soon!!!

 

[Ross]

I'm facing a similar problem. I was low 2 weeks ago (1.7) and the nurse wanted to increase my weekly total by only 7%. I disregarded her advice and increased it by 13%. This week I was still low (1.8). Thank goodness I had ignored her previous advice or it probably would have dropped even lower. This week she was more aggressive and wanted to increase it 12% higher than what I did the past 2 weeks, but I'm tempted to ignore her again and increase it by at least 15%. The nurses are so hesistant to increase the doses. It's very frustrating!! I hate to ignore their recommendations but I don't want to have a stroke! I hope we both get stable soon!!!

Not to hijack the thread, but could you post your dosing schedule please? I wanna see what they're doing to you.

 

[Ross]

I have the same problem as Robbyn and kbheart. I'm not hijacking the thread, just empathizing. Coumadin is not just another pill for some of us. Al Lodwick, can you tell us what percentage of people have longterm problems with INR stability?

Until he comes around, can you post your schedule and INRs too?

 

[Ross]

It's just strange, that's all. Usually has something to do with management or what your doing or eating. I was just trying to pick up on what it might be.

 

[Guest]

I just posted new thread on the "valve selection" forum about a meeting that I attended last week. The speaker was a doctor who was present when the first St. Jude valve was implanted and is still active. His concluding statement was that the strongest predictor of a good outcome is that the patient is able to test their own INR and make their own adjustments accordingly.

 

[Cooker]

Am I the odd duck out here? I seem to eat what I want when I want and I test at my cardio's once a month and am always in range. He use to have a Coagucheck (sp?) now he has the INRatio (sp?) or whatever the new on is. One time I hit 1.9 but other than that all seems to be well. If it's not then I don't know about it. The nurse said some people just seem to have no problem and others struggle all the time.

Anyway I would rather count blessings than Vit K grams

Cooker

 

[kbheart]

Not to hijack the thread, but could you post your dosing schedule please? I wanna see what they're doing to you.

Mine has been screwed up all winter because I've been on and off of drugs and now that I'm feeling better I've been doing a lot more exercise. On April 24th, I had been taking 4 mg six days and 6 mg one day. But my INR was 1.7 so so the nurse suggested increasing it to 6 mg two days (a 7% jump). But that didn't seem high enough to me so I increased it to 6 mg three days (a 13% jump).

Then I went back this past Tuesday and it was only 1.8. She suggested increasing it to 6 mg five days (a 12% jump). I've decided that I'm going to increase it to 6 mg six days (an 18% jump).

I want a home monitor!! I need to make some calls!

 

[Ross]

Your going to be around where I am. I should have 5's and 1's to make 6, but all I have are 5's so it's 5mg 5 days a week and 7.5 two days a week. I'm at 40mg for the week.

 

[Karlynn]

Rachell - how widely are your INRs swinging? Give us some of your number history so we see what you mean by "unstable". How often are you below range?

You sound like a good candidate for home testing. Do you manage your own dosing. Studies are showing that those that home test and manage their own dosing are more stable that those who don't.

 

[Guest]

An INR that never stabilizes can be an indication that you are dealing with Antiphospholipid Antibody Syndrome. Over the past 10 years I have advised 3women that they probably had this because of the unstable INRs. They all had false negative tests in the past but eventually turned up positive.

Some of the information could be things that you would not care to share on a public forum, so if anyone wants to send me an e-mail about this, I'll try to help you . [email protected]

 

[OldNick]

Thirteen-Year INR History

Thirteen-Year INR History

I posted this yesterday on another thread, but the topic seems to repeat. I have been managing my Coumadin for most of the 13 years since I had St. Jude Aordic and Mitral valves installed. For some reason, my required Coumadin dosage is only 17-20mg per week, so I mix combinations of 2.5 and 3.0mg tablets to keep the daily doses similar.

An Excel chart is attached.

 

[Robbyn]

Update

Update

Thanks so much for all your replies. I went and my INR done again today. Although my increase would not have shown up this soon (last tested on Tues) she wanted to make sure it wasn't still falling. It was 1.7. She will call me tomorrow and tell me what to take.

She said I must eat a small salad every day. She said that doing that everyday will metabolize the Vitamin K. She felt that I have only been unstable since the end of March. Before that it always ran low but was mote stable.

I believe I should be taking more but, she does not agree. That's the thing she is from a very large hospital's clinic and has a alot more experience than me. And really, I have an autoimmune disease I deal with, so that could very well have some effect also.

Al, I am hoping it has nothing to do with Antibodies, although I do test positive for P-ANCA, because of the autoimmune disease.

I remember the heart surgeon sitting beside my bed at the hospital telling me not to worry as Coumadin doesn't really have side effects. He just forgot to mention what a headache it is. I just get frustrated with it sometimes.

Take care everyone,
Robbyn

 

[Guest]

Nick,
The average warfarin dose for someone over 65 is about 4 mg/day. You are nopt all that far out of the ordinary.

Robbyn,
Salads supply vitamin K. They do not metabolize vitamin K. Vitamin K does not metabolize warfarin. It simply counteracts its effects. You will have just as much warfarin in your blood as when you ate less salads, it just will be ineffective.

 

[geebee]

Robbyn,

I am getting very concerned about your INR. For your coumadin "manager" to choose not to increase your dose, with you at 1.7, but to also tell you to eat food that has a high vitamin K content just does not make any sense whatsoever. She is setting you on a dangerous path.

IMHO, you need to either ignore her instructions or find a new clinic.