INR changes with the wind

[Jackie]

Thank you Marty,

I am going to take your advise. I found it very interesting that while I was on the internet I received a message from the anticoagulation clinic telling me that maybe I should take 5. 0 today, Saturday, and Sunday and come in for a blood test on Monday because I seemed to be concered about a stroke. I have made the coment that it was eaiser to replace blood cells than brain cells. They wouldn't let me out of the hospital until my INR was 2.0.

I would like to thank everyone on this forum for their help. Maybe someday I will be able to help some body, just have to learn a bit more about what is happening to me. My surgery was an emergency and I did not have any time to plan or think about what was happening.

Jackie

 

[catwoman]

Jackie:

There is definitely a learning curve for warfarin patients -- I'm sure that diabetics also have a learning curve.
But in time you will have that knowledge and be empowered to make decisions about situations that otherwise yo-yos would be making (wrongly).

I wonder how many anticoagulation managers or clinic employees have practical knowledge of the drug they are "managing"?

 

[Ross]

Well that's nice, but what are they going to do when they test you Monday? Change the dose again? They need to put you on a single dose and test in one week. This every 3 days thing is not accomplishing much.

 

[Karlynn]

Jackie, don't feel like you should know more than you do right now. I've been on the drug almost 15 years. It's just since being a member here and Al's site that have given me the knowledge and confidence to take charge of my warfarin management. Fortunately, I have a cardio who is on board and comfortable with me doing that. She knows I'll call her if I feel there's a problem. She's even begun encouraging other patients of hers to take more of an ownership in their management. She said that some are willing, others don't want to mess and just as soon she do it.

I'd really be curious as to how many other warfarin patients that this woman manages also have INR's that are "blowing in the wind". Something tells me that there are probably quite a few, and she is just chalking it up to it being a nasty drug.

 

[aussigal]

AV. My dose is changed almost everytime I have a reading.

I am no expert here but when my dose was changed as often as you say yours is I had yo-yo INR levels too...
Like you, I too was a victim of tests every 3 days. Eventually I got brave and ignored their request to come back in 3 days and left it a whole week. This was the beginning of a stable INR for me.

This is what worked for me....
...once I took charge and educated myself, I made only a 10% change to my dose if it really needed it. Soon everything settled down. I havent been out of range for months now. I wonder if even the stress of worrying about your INR sends your level crazy.

 

[Ross]

I am no expert here but when my dose was changed as often as you say yours is I had yo-yo INR levels too...
Like you, I too was a victim of tests every 3 days. Eventually I got brave and ignored their request to come back in 3 days and left it a whole week. This was the beginning of a stable INR for me.

This is what worked for me....
...once I took charge and educated myself, I made only a 10% change to my dose if it really needed it. Soon everything settled down. I havent been out of range for months now. I wonder if even the stress of worrying about your INR sends your level crazy.

Yes and you thought I was pretty nuts telling what I did, didn't you, and look where you are today!

 

[Marty]

Jackie:

There is definitely a learning curve for warfarin patients -- I'm sure that diabetics also have a learning curve.
But in time you will have that knowledge and be empowered to make decisions about situations that otherwise yo-yos would be making (wrongly).

I wonder how many anticoagulation managers or clinic employees have practical knowledge of the drug they are "managing"?

Good question. Each new warfarin patient must find their individual weekly dose, and at least in my experience this remains stable. My weekly dose is 19.5-21 mgms. It took me about two months to establish it and after that I paid no attention to the yo-yo ladies in my cardiologists office. He promptly prescribed a Coaguchek for me and since then I have not bothered my doctors with warfarin dosage.I truly believe folks who are bright enough to contact vr.com and ask good questions like Jackie can self test and very quickly self dose.
The oracle at Delphi gave good advice when she said "Know thyself-nothing in excess"!

 

[aussigal]

Yes and you thought I was pretty nuts telling what I did, didn't you, and look where you are today!

I didnt really think you were nuts just very brave to be going against the Docs. orders, I was just scared of the unknown ...once I learnt how warfarin worked and gave it a try myself it was easy-peasy. Now they ask me what I think.

You know youre my hero dont you ...

 

[Ross]

You know youre my hero dont you ...

Hero's are made of steel, that ain't me.

 

[ALCapshaw2]

Jackie,

Have you read AL Lodwick's site (www.warfarinfo.com) on Warfarin Management? If not, that is a good place to start. Also, you can buy his Dosing Guide for $5 which I highly recommend. AL Lodwick is a Registered Pharmacist and certified anticoagulation specialist who manages his own Coumadin Clinic in Pueblo, CO. He monitors and comments on this forum.

Somewhere I saw a graph that showed Risks vs. INR.
The graph was FLAT from 2.0 to 5.0
Below 2.0 the risk of STROKE goes up linearly.
Above 5.0 the risk of BLEEDING goes up.
It is RARE to experience bleeding at 5.0 and some of our members have even reported NO Bleeding at 8.0.

Also note that HOLDING for 2 DAYS is GUARANTEED to drop your INR like a ROCK, just as your experience confirmed. Personally, I would have cut my dose in half for one or two days and NEVER would I hold to 2 days based on an INR of 5.6. Holding for ONE day is another option.

I've found that SMALL changes (5 to 10% on a weekly basis) are all I need to 'tweek' my INR. Note that it takes 3 or 4 days for warfarin to be fully metabolized. Testing sooner than 4 days after a dose change GUARANTEES that your INR will still be changing from the original dose change and changing again GUARANTEES your INR will "rollercoaster". Many of us prefer not to test more often than once a week unless the INR was WAY out of range.

I would ask your Cardiologist (or surgeon) if there is another REAL Coumadin Clinic you can go to. The Yo-Yo's you are seeing are CLUELESS.

'AL Capshaw'

 

[Jackie]

Thank you Al,

I just ordered the Dosing Chart. The more I stay on this site the more comfortable I become with being able to take charge of things I didn't think possible.

Thanks to everyone!!

Jackie

 

[Ross]

Thank you Al,

I just ordered the Dosing Chart. The more I stay on this site the more comfortable I become with being able to take charge of things I didn't think possible.

Thanks to everyone!!

Jackie

Once you get a handle on things, you'll laugh at how easy it is and then wonder why these people managing you had such a hard time!

 

[Jackie]

I sure hope so. I go in tomorrow for another blood draw. Not looking forward to it, won't be any good and my left arm has a huge bruise from Friday so now I suppose my right arm will match. I am going to refuse to come back again until next Monday.

Jackie

 

[catwoman]

Just wondering...

Just wondering...

Do these anticoagulation "managers" really really believe they are managing patients -- or is this a very subtle way to make $$$?
It takes about 72 hours to start showing results from the FIRST day's dosage change. If a "manager" (mismanager???) is having a patient come every 3 days, what shows up on an INR is only the results of the first day's change. And a charge to submit to an insurer. Keep doing that every 3 days and of course you're playing with a yo-yo as far as stabilizing an INR.
Meanwhile, someone's getting rich.
My co-pay is $20 for an INR, if it's not in conjunction with an appointment with my PCP.
Don't know how other medical plans work.

Don't know how the medical profession works. I do know that veterinarians who work for corporate-owned veterinary practices (VCA, for one) are expected to bill out $X each day. There are subtle ways to accomplish this.
Just don't know if it works the same way with any corporate-owned human medical practices.

Call me skeptical, I guess.

 

[Guest]

Business is business whether you are taking care of cats, people or selling peanuts. They all have quotas to meet. Even hospitals.

 

[catwoman]

Business is business whether you are taking care of cats, people or selling peanuts. They all have quotas to meet. Even hospitals.

Sounds like police departments & speed traps, too.

 

[Marty]

Business is business whether you are taking care of cats, people or selling peanuts. They all have quotas to meet. Even hospitals.

Please note; Jackie is a Kaiser patient. In the HMO setup, Kaiser loses money every time they do an unnecessary test or procedure. It is ignorance that leads to overtesting and yo-yo-ing not money.

 

[Jackie]

I just got the call on my INR taken today. It is still at 1.8. Now I am going to take 7.5 today and tomorrow and retest on Thursday. Does anyone have any coments? I am afraid that it has been too low for too long. Blood clots scare the hell out of me My father had many of them and was not the same for many years befor he died. My husband is in a long care facility because of a heart attach and revived to late so he has brain damage.

Jackie

 

[Ross]

Jackie can you post what you've taken everyday for one week? Increasing the dose and testing Thursday is only going to tell you if your INR is higher, but it's not going to be the correct reading overall.

 

[Sherry]

Just to add to the fray...

Just to add to the fray...

I tested 8.0 at my cardio's office this morning. I had my blood drawn after school to see if there was a discrepancy. (There was the last time this happened.) Anyway, I'm holding two days. Wish me luck. I had been fairly consistent for awhile, so this really ticks me off. And after nine years on this drug, you would think I could get it right...