INR changes with the wind

[Jackie]

AVR 4/6/06, on Warfarin because I have a Mechanical Valve. The last 2 months have been really trying.. 4.6, 3.5, 2.7, 2.6, 3.6, and yesterday 5.6. I have been pretty consistant with food and exercise. What else could be affecting the INR results? Yesterday I was told to hold dose last night and today, come back tomorow for another test. My dose is changed almost everytime I have a reading. Does it make any differance if the test is done stat? Is is sent out half the time? Any help will be greatly appreciated.

Jackie

 

[catwoman]

Jackie:
What is your warfarin dosage weekly? Is it the same each day? Are your INR tests being done the same day of the week? Are these lab draws or fingerstick tests?
What other meds are you taking? Have you started/stopped any during these 2 months? Have you had any gastrointestinal problems? Any dehydration?
Who is managing your anticoagulation therapy (tests & dosage adjustment)?

I wouldn't hold for a 5.6, at least not TWO days' dosage. I would reduce my dosage -- don't have my chart right now to say how much -- and retest in 7-10 days to see if that helps.
If you were tested yesterday (9/27) and will be tested again tomorrow (9/29), that's really too soon to see any real results.

My INR does vary a little each time. My exercise level/food & fluid intake aren't 100% consistent every single day. It may go a little over range, never under range because I attempt to keep it at the high end. (You can replace blood cells, not brain cells.)

I'm sure others will jump in here soon, if not immediately, with their $0.02 worth.

 

[RandyL]

According to Al's Dosage Chart:

If INR is above 5

1.Hold Warfarin(coumadin) recheck INR in 24-48 hours.
2.When therapeutic again, restart Warfarin(coumadin) at 15-20% less than previous dose.
3.Recheck INR in 3-7 days.

If you have any signs of bleeding go to ER.

 

[Ross]

Sounds like another case of poor management or not knowing how to manage it.

How often are you tested?

What is your current weekly dose?

 

[Jackie]

My weekly dose is 30mg and I test anywhere between 7 to 12 days.Could the fact that they send the blood out somethimes have anything to do with the differance in the readings? I am still working on getting my home testing monitor but QAS still has not received some information(like range, that I have a mechanical Valve) from Kaiser, just a few inportant items???????????

Jackie

 

[Karlynn]

How often are they changing your dose?

Are you getting your results the same day you test?

I'm assuming they didn't do anything to your dose when you were in the 2's.

I'm like Marsha - I wouldn't hold 2 doses for a 5.6. I'd probably hold 1 dose and adjust my dose by 10% and test in a week. But I've been on warfarin for many years, so I know what my body does with dose changes.

I would not say that you are too inconsistent in your INR's, particularly for being less than 6 months away from your VR.

Don't forget that there's a +/- variance with every INR test of about .5, which is quite a bit. The problem can come when those that manage your coumadin fret over a few points one way or the other and make dosage changes. A month or so ago, I tested at 5.3. I usually retest for an INR over 5. So I retested right away and got a 4.8. I adjusted my dose 10% and was 3.6 the next week.

Good luck on getting your home unit!

 

[Ross]

Yes you need the test results the same day and if they're changing the dose everytime your tested, they are at fault for your swings.

 

[KristyW]

AVR 4/6/06, on Warfarin because I have a Mechanical Valve. The last 2 months have been really trying.. 4.6, 3.5, 2.7, 2.6, 3.6, and yesterday 5.6.

Jackie

Why in the world are they changing your dose for 3.5, 2.7 & 3.6???? Those are technically in range. Even if your Dr is using the AHA guidelines (2.0-3.0) for AVR, the 2.7 & 2.6 are dead on, there would be no reason to change. I think you need to ask your Anti-Coag manager why the dose changes.

Just my $.02.

 

[belajob]

on-x valve

on-x valve

I too have challanges with my levels. I had an aortic valve replacement last year- my surgeon used the ON-X mechanical valve and from what I have researched it appears the levels can be lower. Has anyone had any experiences with the on-x valve? (My levels currently are in the 2.6 range)

 

[Karlynn]

Welcome belajob!

I can't answer your question about On-X. But I did want to say that if you feel your INR is unstable (out of range a lot) you need to look to your Coumadin manager. We find that many times, unstable INR's are from Coumadin managers changing dose too often for slightly out of range INR's. If your range is 2 - 3, your manager really shouldn't be chaning a dose for a 3.5, or even a 4. The frequent changing of doses causes the INR to flucuate.

So you may want to take a look at your records and see if there's a trend for dose changes when you are our of range, and then look to see how far out of range you were.

 

[catwoman]

The frequent changing of doses causes the INR to flucuate.

So you may want to take a look at your records and see if there's a trend for dose changes when you are our of range, and then look to see how far out of range you were.

Karlynn has an excellent point.
If you have someone else managing your anticoagulation & doing your INR tests, you should also be keeping a record of all your test results & dosage changes. You can get a INR diary from your doctor's office (that's where I get mine) or you can also download one from various places on the internet.
Here's one:
http://www.ptinr.com/docs/inr_results_calendar.pdf#search="INR test results"

I jot down when I recharge my home-tester's battery, start/stop a round of meds, am ill, any factors that might affect my INR results, how much I reduce my warfarin dosage because of a low or extremely high INR. These become valuable over time when you can look back at how you handled a situation and how to handle a similar situation.

 

[Jackie]

INR Results with Kaiser

INR Results with Kaiser

Thank you everyone for you response. I am very frustrated because when I try to bring anything up to the AntiCoagulation Clinic it is brushed off like I had not made any coment. They make the changes anyway and I am afraid not to follow their instructions. The doctors at Kaiser do not handle or regulate the dose I feel like I am at their mercy.I"m off for another test to day, hope the results are to their liking.

Thanks again,
Jackie

 

[Georgia]

One thing we learn on this site is that sometimes you have to put your foot down and NOT do what the coumadin clinic/doctor says. There aren't very many of us valvers out there (proportionally); and docs don't like to mess with coumadin anyway. So they have these kneejerk reactions and act like that extra helping of broccoli is the cause of all our problems.

For instance: last month my inr was 4.1 (my range is 3 - 4). My doc was out of town and his (new) nurse asked another doc "what to do" - as though anything needed to be done. The answer was to hold one dose and reduce the dose by 10%. I told the nurse that it wasn't going to happen; that I considered 4.1 to be in range. I retested in 2 weeks and it was 3.5.

End of story. For this month.

Good luck. Hope you're able to get it regulated.

 

[Guest]

Your dose is being changed for no rational reason.

 

[Jackie]

How do I tell Kaiser that I don't believe that they are right when I get the call to change my dose.

Jackie

 

[Karlynn]

How do I tell Kaiser that I don't believe that they are right when I get the call to change my dose.

Jackie

I'm assuming that it's Kaiser or nothing as far as testing right now.

Do you have a few different strengths of Coumadin? Get Al's dosing chart, get a dosing/INR journal and start keeping track of INR and the dose you were on to achieve that INR. This link also has some useful graphs. http://www.aafp.org/afp/990201ap/635.html

I graph mine INR record, because it helps me to see the picture as well as the number. Start keeping track, this will allow you to see what your body does with doses and changes. This will give you more assurity when you begin to dose yourself. But first, start educating yourself on guidelines. I'll warn you that the guidelines can be very broad - such as: for INR's above 5 hold no to one dose and/or decrease weekly dose by 10 - 20%. This is where knowing how your body reacts to doses will help. I rarely hold a dose for a 5.0. I have on a 6.0. And I rarely decrease a dose by more than 10%.

Once you get comfortable with your knowledge, then start telling Kaiser what they want to hear "Yes, mam, I'll make the change." And then do what you feel is right. But keep records. This way, if a question should come up, you have your history right at your finger tips.

 

[Jackie]

Kaiser just called to give the results of my test today. My INR is now 1.8, should be 2.5 - 3.5. Wed it was 5.6 it droped that much from holding two 5.00 doses. Now she told me to take 5.0 today and 2.5 Sat & Sun. I discussed with her what I am learning on this forum and she became very upset that I would question her. "After all, I could get sued if you bleed I have your best interest in mind". I asked her if I have a stroke would she have the same responsibilty? She answered that was quite bold of me to ask. All it was not a good conversation.

Jackie

 

[Karlynn]

Good question Jackie! When I was reading what she said about bleeding I thought the same thing. Drs and other medical people fear bleeding, we fear stroke. You can also ask her which is easier to replace- blood cells or brain cells.

Figure out what dose you were on when you were in range. Chances are your "sweet spot" dose is there.

Next time, ask to speak to her supervisor if she speaks to you like that. Quite frankly, it's not your concern whether she gets sued and if her main concern is not getting sued, then it certainly is not getting your INR in range. Do you speak with the same person every time.

If you are stuck with these people - time to start learning how to dose yourself and then just tell them what they want to hear. I would also give your cardio a call and tell him/her of your problems. Your fluctuating INR is due to mismanagement, not your body.

 

[Marty]

How do I tell Kaiser that I don't believe that they are right when I get the call to change my dose.

Jackie

I am a radiologist practising at Kaiser Falls Church VA.I had 35 years of private practise before I went with Kaiser half time. Our pharmacists seem to do a good job managing warfarin; better than the doctors I was associated with in private practise. and I hear no patient complaints. However I agree with you. Your pharmacists don't seem to know what they are doing. I advise contacting your surgeon and letting him/her know whats going on. Then I would ask your primary care doctor for a referral to a hematologist. They are clotting-bleeding authorities and know warfarin backwards and forwards. Don't be afraid to be your own aggressive advocate at Kaiser. I can assure you , the Kaiser "brass" encourages patients to let them know when there are problems.A squeaky wheel gets the grease!

 

[Ross]

Kaiser just called to give the results of my test today. My INR is now 1.8, should be 2.5 - 3.5. Wed it was 5.6 it droped that much from holding two 5.00 doses. Now she told me to take 5.0 today and 2.5 Sat & Sun. I discussed with her what I am learning on this forum and she became very upset that I would question her. "After all, I could get sued if you bleed I have your best interest in mind". I asked her if I have a stroke would she have the same responsibilty? She answered that was quite bold of me to ask. All it was not a good conversation.

Jackie

Jackie don't get mad, get even. You stepped on someones toes who thinks that they are the authority. Truth is, they are causing your problems, so the authority label just got pitched out the window. What was it Al said, "A monkey with a handful of darts could get the same results" or something to that effect.

If you cannot get a referral to someone that knows what they are doing, your going to have to take the bull by the horns and do it yourself, then just tell them what they want to hear. It's not safe for me to say that, but in all honesty, many of us have had to do just that or we'd still be getting poked and changed and seesawing all over the place.

What I would do is, go back to 30mg for the week and retest in one week. See where you are then. If your between 2.0 and 4.0, your in the house and it will only take a minor 10% +/- to get you where you need to be.