Mismanagement:or how to take charge of your dosing

[Gail in Ca]

Since I got my new machine, I've had to email my results, and if they are off, my HMO's coumadin clinic nurse gets a call from Alere.
On Friday, my INR was 1.5. She calls me and leaves a message to keep the same dosage and test in a week! I call her back and say when I used to manage myself, I would have taken more warfarin that day! She says, okay, how about you take 10mg tonight, and then test in a week. (I have been taking 7.5mg QD). So, I did that and just tested today,7/4, only 3 days later, and it was 1.7. I will take 10mg again tonight and then test again when she wanted me to, on Thurs.
Since I have been letting her tell me my dosage, I feel less confident doing it myself now, even though I did it for 8 yrs before this. I am going to contact my PCP and ask her if my cardiologist's nurse can get the call from Alere, as I feel she is better at dosing someone like me, and she is willing to up the dosage to get it in range. She just seems to know more about low or high INR and what to do about it. She told me she also has had training in ACT. And, I think, because she is a cardio nurse, she is more educated about heart related issues.
I was just amazed at the coumadin clinic nurse's advice not to do anything for a week!
Sometimes we really have to be our own advocate for our INR, and our health!

 

[ALCapshaw2]

IMO, That HMO Nurse should be reported to your Cardio, PCP, and whoever she works for for INCOMPETANCE.

 

[Protimenow]

I agree with Al -- that nurse's competence seems to be in question, and possibly even dangerous.

For myself, I recognize that I'm looking at total WEEKLY dosage when I calculate any changes in my dosing. If I had the 'benefit' of an anticoagulation clinic or a cardio's office with someone who supposedly knows about anticoagulation management, I'd use their 'prescriptions' as a guideline - but not necessarily follow it. If you've been able to accurately manage your dosing, you should be able to continue to do so. If your cardio's nurse has been giving you the right advice, see if you may be able to contact him or her with your test results and bypass that clinic. You SHOULD be able to tell Alere where you prefer your results to be sent.

One thing I found out recently - and didn't really pay a lot of attention to -- is that is you take a different dose on some days than you do on others, your INRs would also vary depending on the day you test your blood. I found that it's best - if at all possible - to take the same dose EVERY day - even if that means splitting pills in half so you get a more even daily dose. This way, no matter which day you test your INR, your INRs should be consistent throughout the week.

(And, I agree with you -- we have to be our own advocates because it's OUR well being that we're managing. It's also great to have a meter, so we can self test)

 

[Mileena46]

I have to agree with that. My INR use to jump all over the table, and next week it may be off again, but since I am on a steady 6mg a day it is much more stable.


Mileena

 

[Gail in Ca]

I asked my cardio RN, who is now going to manage my dosing, about using a steady dose. She still wants me to take now 7.5mg 4 times a week and 10mg 3 times a week. That's up from 7.5mg daily. She hasn't seen steady dosing used much in her career with cardios.
I did tell her about my problem with the coumadin clinic nurse and she wasn't happy about it. I am going to call her with my results, and just let Alere keep sending it to the coumadin clinic.

 

[Protimenow]

You're taking 60 mg a week. With that dosage, it's a bit difficult to break it up much further. HOWEVER, you may do a bit better with 9 mg 5 times a week (that's a 5 and a 4), and a 7.5 twice a week (maybe Tuesday and Friday)? This will still help you reach your goal (although you may wind up taking more pills to achieve it), but I'll bet your INR will be more consistent throughout the week than it is with your current dosing. You might ask your nurse about this. In my personal experience, I DID see differences when my dose varied much on certain days -- trying to keep your daily dosing fairly consistent from day to day will probably also be reflected to a slightly more consistent INR if you test frequently. I know it was with mine.

 

[LeakyUK]

I have a set of 3mg, 1mg and 0.5mg Warfarin tablets - aiming at a consistant daily dose. Testing has gone from twice weekly to weekly and I will will move out to every four to six weeks. Currently 4.5 mg/day. UK practice is definately to keep a steady dose.

 

[dick0236]

I am also in favor of steady warfarin dosing. I used to have a GP who was always "tinkering" with combinations of dosing strengths and he kept me on a continuous yo-yo. My INR is influenced by the dose I took 3-4 days prior to the test and the test result would be different depending on wheter I took a hi, or lo, dose a few days before testing. Trying to mico-manage warfarin, for me, has proven to a waste of time...and money. If I am out of range, I add or subract 1/2 dose by breaking a pill, and recheck in a week. I have been on a steady 5mg daily dose for +/- 7 years...since leaving the "tinkering" GP. Proper dosing, after your range has been established, should not be "rocket science".

 

[Protimenow]

Leaky:

You might wind up taking fewer pills if you got some 4 mg pills and took a 4 and a 0.5. FWIW, the doses available make it possible to put together nearly any dose within 1/2 mg of what you want. I wasn't aware of 0.5 mg, but I know that there are 1, 2, 2.5, 4, 5, 7.5 and 10 -- with this combination and a pill splitter (or strong thumbnails), you can make practically any dose.

If you have your own meter, and can afford the strips, weekly checking shouldn't be a problem (but, of course, if your INR has been stable for a long time, weekly testing may be overkill).

 

[ALCapshaw2]

I asked my cardio RN, who is now going to manage my dosing, about using a steady dose. She still wants me to take now 7.5mg 4 times a week and 10mg 3 times a week. That's up from 7.5mg daily. She hasn't seen steady dosing used much in her career with cardios.
I did tell her about my problem with the coumadin clinic nurse and she wasn't happy about it. I am going to call her with my results, and just let Alere keep sending it to the coumadin clinic.

I'm wondering how she told you to take the 4X7.5 and 3X10?

If you take 7.5,7.5,7.5,7.5 and then 10,10,10, I would expect to see some variation in INR depending on what day you test.

To minimize the variation, it would be best to take them as follows
7.5, 10, 7.5, 10, 7.5, 10, 7.5 on S M T W T F S

 

[LeakyUK]

The UK NHS only supplies the 0.5, 1, 3 and 5, and I was told at hospital discharge that 5mg were not commonly supplied! Cost is not an issue since I now pay a fixed £104 for a full years drugs. I actually take 8 pills a day adding in BP medication, prostate tablets and anti-depressants - so its quite a routine at night!! Home testing is frowned on, but the testing is conveniently at my local GP surgery and results and dosing changes are immediate.

 

[Jkm7]

For the brief time I was on coumadin post op, I was over 90 mg per week.
Of course, I used 10 mg tablets .......... would have been ridiculous for them to not be supplied to someone like me who took such a high dose. Why won't they supply the dosage needed in the most convenient size?

 

[Protimenow]

A few posts back, I suggested a more steady dosage of 9 mg (which, for you, would be 3 3mg tabs) 5 times a week, and 7.5 (or, in your case 1.5 5 mg tabs) twice a week (perhaps Tuesday and Friday). This would be a lot of pills - but would let you do 60 mg a week (if that's what you need) in a pretty consistent dosing schedule.

I'm glad to see that Al agrees that your INR would vary based on the day you test -- this was my point, too. Keeping to 9 or 7.5 would be a lot more consistent than 7.5 and 10.

 

[Gail in Ca]

My last test on Tues gave me a result of 1.9! So, I called my cardio RN, and she raised my dose again. I'm now on 10mg T Th Sat Sun, and 7.5 the rest. I guess I'll wait until I am in range before pressing on the more consistant dose. My INR dropped so much,
and all I could figure that I did differently was stop drinking alcohol. I just decided I shouldn't drink anymore, and my INR dropped big time. Although the chief surgical resident told me even 1.8 would be ok, I would still like it above 2 in general. At least I don't freak out as much when it goes a bit below 2, but I must admit I did not like that 1.5, that's just risky low!