Mother treated with warfarin and coumadin.

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Tests show she is in target range of only 20% of the time. What steps can I take.. Mother has been receiving warfarin for over 4 years due to a clot in her lungs . She also has been diagnosed with micro vascular dementia. I live over 1000 miles from the nursing home but review her medical records and talk to nurses at the home regularly. The clotting reduction is measured by a test called PT/INR. For treatment to be considered effective she should show results between 2-3 in at least 80% of the tests. Instead, she is in this range only 20% of the time and is thus not receiving the intended benefit. There are few doctors who are willing to treat Medicade patients, but I have persisted in questioning why she is resistant .The doctor depends heavily on the nurse practitioner and tells her to inform the nurses at the home to tell me she is well controlled. Based on every medical article I have read as well as documents from the American Association of Cardiology she is NOT. I was able to have her seen by a cardiologists who conducted an ECHO and found severe aortic stenosis. Probably the reason for her clot production. I have also finally been approval for referral to a hematologists to determine reason for resistance. After I receive his opinion I will fire her internist. who I believe has hasten her mental decline as a result of micro vascular brain damage and increased the probability of a stroke.. He has never taken my calls or returned my letters, further, he has subjected mother to vena punctures approximately 300 times in the past 4 years and changes her dose of warfarin frequently. The doctor practices in Ohio. What steps can I take to report his apparently lack of medical expertise and prevent others from being victimized.. Money is not my goal, rather a sanction or license removal. I have no money for an attorney.

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I can think of a few things that might affect her PT/INR fluctuations.

1. Not letting a changed dosage be used long enough to determine if it is effective at that range. How often is blood drawn?

2. Another is whether she's eating Vitamin K foods regularly or irregularly. Our pharmacists, who were far better than some PCP or internist who isn't a specialist in this area, explained that eating K foods on a REGULAR basis is better because there's less fluctuation and interaction than if K foods were eaten sporadically. I've found that to be true.

3. Another is the specific brand of Warfarin (some manufacturers' brands are less stable than others). We've found the BARR brand to be the best. I shopped prescriptions until I found a real pharmacist, not a grocery store pharmacist, who bought specific brands and didn't shop for the cheapest thing available at the time. Changing brands was one of the issues raised by our pharmacists in terms of fluctuating values, i.e., when one brand was stopped and another used b/c the pharmacy switched brands (because one was cheaper at the time). That's when I stopped getting any drugs from anything but a really true pharmacist, not a little niche in a grocery store corner.

4. The people who are monitoring her PT/INR aren't pharmacists. Our pharmacists specialized in two monitoring functions: PT/INR for Warfarin/Coumadin, and diabetic monitoring. They didn't treat for coughs, colds, and a range of other things. They were more knowledgable on the Warfarin interaction issues than most doctors.

In fact, one doctor skirted around the issue of handling the blood draws and I nixed that right away.

If your mother's PT/INR is being monitored by a nursing home physician, it wouldn't surprise me that the range fluctuates. These doctors, from what I've seen, are more of a generalist and don't have the experience or knowledge to manage Coumadin use.

The choice to use a pharmacist specific monitoring service was made by our cardiologist, who could no longer handle the mushrooming need for the monitoring and evaluation. So his practice contracted it out to the Coumadin Clinic of another hospital.
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Warfarin and Coumadin are the same thing. Warfarin is the generic brand.

I take Coumadin and while I'm supposed to have a blood test done once a month to check and see if the levels in my blood are therapeutic (the PT/INR you mentioned) I go every week because regardless of what dosage I'm on it's never the right dosage so each week when I get my blood test done and the Dr. sees it he changes my dosage. It drives me nuts. Going for a blood test once a week also drives me nuts.

Coumadin is an old, old drug. There are newer, shinier blood thinners on the market but my Dr. keeps me on Coumadin because I have a blood clotting disorder and he wants to see my PT/INR frequently. From what I understand, he doesn't want to just put me on a blood thinner and then wish me luck and send me on my way.

A friend on mine had a blood clot (DVT) and now she's on Xarelto and it works fine for her.

But like your mom I too will be seeing a hematologist because my PT/INR are never within normal range. Good call on your part in getting your mom in to see a hematologist. Someone had to suggest it to me, it never even occurred to me.

I would definitely fire her internist if he hasn't responded to your attempts to get in touch with him. If he's switching your mom's dosage of Coumadin regularly then that tells me from experience that her blood levels aren't what they should be. That's why my dosage gets switched every week.

Good for you for advocating for your mom!
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