Coumadin Therapy/aortic valve mechanical

[MaryCFriend]

Hello Everyone,
My name is Mary and I am 42 years-old. I have had two open heart surgeries. Dr. Casgrove did the first ( homograph valve) and the second is a mechanical valve that Dr. Lylte put in Dr. Griffin is my cardiologist at the Clinic. I have had such wonderful care and I feel so blessed; however, I had my second open heart surgery a little over four yrs ago and my INR is ALMOST NEVER between 2.5 and 3.5-----actually it is extremely low at 1 or too, too high 7 or higher. Last yr I got soooooooo very sick and was in the hospital for 5 days (which is alot these days). When I came thru the ER at the clinic my INR was at 10. They seemed to be very concerned and I was put on a frozen plasma and vitamin K and it still stayed at 10. It finally came down but then of course after all those treatments they needed to get it back at 2.5. I am so very frustrated and it never gets better. Is there anyone else out there that has a problem with coumadin??

 

[Sarah_Louise]

When i was on it i had the exact same problem! It got so bad with me that they stopped it and i am now on long term heparin injections becuase my body just hated warfarin and was building up a "reaction! towards it,
Have they ever said why you react to it like that?
Sarah xxxx

 

[AgilityDog]

Not me. The real questions are:

Is your coumadin management competent? Who is managing it, and what are their qualifications?
How often do you test?
What adjustments are being made to cause you to swing so widely?
Is your diet reasonably consistent?
Could the reason for your INR swings be other health conditions, including conditions that affect your appetite? If you are not eating well and regularly, that could cause problems. Also, are any of your medications making you constipatated/giving you diahrea from time to time? that can also cause INR swings.
What is your current dosage, what is your INR on that dosage, what were your last 3 INRs and the dosages you were on for them?
Also, be aware, if you were given Vit K shots, then that will have your INR low for weeks and weeks, then it will start to come back up, and you'll be making dosage changes again.
Sooooo many questions. It may not be that you have a problem with coumadin. Rather, you may have a problem with management or other health conditions that make management more difficult for you.

 

[MaryCFriend]

I have the answers............lol The vitamin K shots were last year and before that I always had difficulty. I go every month to my MD for INR check if it is too high or too low it is adjusted and I go back in three days until normal. Good diet... not overweight... not underweight my dosage is 12.5 daily. Last three INR's: 1.4 went to 15 mg for 3 days----------back for testing went down to 1.1 took 17mg for 1 day ---- day two 15mg.... day three 15mg and tested: INr OVER 7. This has been a constanct for 4 yrs................... and the large dosages that I am taking cannot be good for me................but I have to take them. My surgeon told me no Lovanox

 

[MaryCFriend]

It just gets exhausting. I did go and see a specialist at the Clinic hemotology/oncology and he told me that I had something wrong with my factor 8 and 12 but never gave me a solution. Then they have told me before stress and that since I have not been through the change of life and my hormones could cause this.

 

[markp66]

Wow taking 15mg and 1.1! That's insane! People who dont take any warfarin probably have a higher INR than that! Have you thought about home testing? If I had results like yours I'd want to test my INR every week even if it stayed in range for a few weeks. I get slightly panicked when my INR is above 2.8 so I can completely understand your concern and as you say, it must be so exhausting for you.

I hope they get to the bottom of it. 4 years is a long time to be consistently out of range. Hopefully in the future there will be new drugs that are easier to manage. Pradaxa is already being used for patients with a-fib. I'm not aware of any trials with mechanical heart valves but many cardios and surgeons think there will be a better alternative to warfarin within the next decade or even earlier.

Good luck.

 

[Sarah_Louise]

Wow taking 15mg and 1.1! That's insane! People who dont take any warfarin probably have a higher INR than that! Have you thought about home testing? If I had results like yours I'd want to test my INR every week even if it stayed in range for a few weeks. I get slightly panicked when my INR is above 2.8 so I can completely understand your concern and as you say, it must be so exhausting for you.

I Done home testing when i was on it, at one point i was taking 25+mg of warfarin and my INR was still only 1.0!! Then it'd start to rise but forget to stop! End up i was having no warfarin but still producing INR's of 8.0!!! So my dr's decided to put my in heparin long term, and now there looking at me possibly starting on Dabigatran: http://www.theheart.org/article/995769.do
So hope that'll be another option for people that can't tollerate warfarin
Sarah xxxxxx

 

[AgilityDog]

Mary
I'm not going to try to adjust your dosage for you, but usually changes are made in the range of 5% at a time, up to 10% per week. not twice a week.

If you were taking 12.5 mg per day, that's 87.5 mg per week. a little on the high side of average, but certainly not unheard of. It depends on a person's diet and metabolism. Everyone is different.

The dosing calculator (www.pace-med-apps.com) estimates your dosage should be somewhere between 90 mg per week to 99 mg per week. Maybe you've just added a bit too much a bit too quickly. Slower, smaller increases might serve you better.

a 5% adjustment from 87.5 mg per week would be an increase of 4.375 (call it 4 mg) per week, to 91.5 mg/week, or even 92 mg per week. That's 13.1428 mg per day. Call it 13, maybe throw in one 14 dose day.

A 10% increase would be 96.25 mg per week, or 13.75 mg per day - call it 14 most days, 13 a couple other days.

If you got increased from 12.5 mg per day to 15 and 17 mg per day, that's about 109 mg per week, or a 15% increase. That's a bit fast. And more coumadin than the dosing calculator suggests.
Adjustments should be made slowly and carefully, not in great big whallops.

There is a dosing calculator online - check out our sticky notes under the anticoagulation forum to find a link to it (or cut and paste above).
That calculator will help estimate what your dosage should be from any given point. Testing every 3 days is the absolute minimum time to permit the INR to increase. 5 to 7 days would be better.

Your coumadin manager's adjustments should fall very close to what the dosing calculator reads. If not, you may be being mismanaged.

 

[ElectLive]

Some patients do experience warfarin resistance, and there was a fairly recent thread where it came up: http://www.valvereplacement.org/forums/showthread.php?38934-NEED-HELP-Body-NOT-responding-to-anti-coagulation

Pradaxa and Dabigatran are one in the same. There was an announcement back in August about the launch of the first mechanical valve trial - RE-ALIGN. It may not have officially started, and only be very early in the recruitment stage, I'm not sure.

 

[AgilityDog]

Sure, there are a very few cases of resistance to coumadin.

But it sounds more to me like Mary could use a better understanding of how dosing should be done, and better management with smaller increases (and weekly testing) before deciding that she is "coumadin resistant."
Her case sounds like classic under/over managed roller coaster, to me.

 

[ElectLive]

Sure, there are a very few cases of resistance to coumadin.

But it sounds more to me like Mary could use a better understanding of how dosing should be done, and better management with smaller increases (and weekly testing) before deciding that she is "coumadin resistant."
Her case sounds like classic under/over managed roller coaster, to me.

I was actually responding to the two posts directly above mine (Mark and Sarah) - but this became even less obvious when you snuck your dosage adjustment post in between while I was still typing!

That confusion resolved, I should point out that I don't disagree with you about Mary's situation. Even in more extreme cases, like what I was referring to, the protocol for establishing warfarin resistance (linked in that other thread) does not begin with genetics, it begins with habits (diet and dosage) before moving up the scale of reasonable cause. In between are things like malabsorption disorders also.

 

[MaryCFriend]

Thank you everyone---It is just so nice to talk to someone. I just get so very scared and my son is only 16 and I am scared half to deat h to go back to the Clinic even though I know I need to make my appointment. Thank you for caring and taking the time to post. I am definitely going to check out the sites you listed :angel: