Anti-Coagulation clinic nearly useless -- maybe even dangerous

[Protimenow]

I've been going to an Anti-Coagulation clinic since April. I've been self managing for years. To me, the real value of the clinic is the lab tests for confirmation of my meter results - and to see how this busy clinic is 'managing' its patients.

Simply put, my impression is very far from positive.

Granted, I'm assuming that a majority of this clinic's patients are on public assistance, and probably not capable of doing any complex dosage manipulations (give them ONE pill, have them take it ONCE a day, and don't expect them to be able to figure out 1 1/2 pills every other day, and 1 pill on the other day, or anything complicated like that), but the advice I've gotten has been contrary to advice I've given or the logic behind warfarin metabolism.

First - they have FORBIDDEN me from doing self-testing. (I still do it, but don't tell them). For some reason, they want to be the only authority for my anticoagulation management.

Second - once I had INR readings for two consecutive weeks that were in range, they were comfortable with monthly testing. (I'm not--I firmly believe that weekly testing is the best way to stay on top of my INR).

Last week, my meter read 1.8. An hour later, I tested at the lab. I wasn't sure what to expect from the lab results, and had to call the clinic twice, the next day, to get results. The night of my meter test, I increased my dose according to the Duke Clinic's guidelines, to an extra half dose that night. The next day, the clinic finally got in touch with me - and told me that my INR was 1.75. I was grilled with the usual questions -- have I changed my diet, how am I taking my pills (orally), have I changed medications, etc., etc. Finally, I was told to take an extra 1/2 dose and retest in a week.

On Wednesday, I retested. My meter gave me 2.7. I'm comfortable with that. The lab got 2.42 (I'm also comfortable with that). TWO days later, after having heard nothing from the lab, I called and left a message. The end of the day, I got a call from the clinic. They seemed a bit disturbed by the 2.42 -- my range is supposed to be 2.5-3.5. Apparently, this clinic believed that lab values are ABSOLUTE, and that there is no such thing as MARGIN OF ERROR. I'm convinced that if the lab was 2.95, the clinic would still believe that my INR is out of range and launch its protocol.

I was hit with the same stupid questions that I got a week earlier -- how do I take my warfarin, has my diet been consistent, etc., etc. I told her that I don't eat dark greens. I was told to eat even less. I told her that the protocol is probably to increase my weekly dose by 5% - she confirmed this.

I'm taking 52.5 a week (seven 7.5 mg pills). She calculated a weekly increase 2.6 mg. The brilliant correction that I was given was to take 1/2 of a 7.5 mg pill THAT NIGHT, and to retest in a week. I tried to explain that the spike I get from that night's dose wouldn't be reflected by a test a week later - but it didn't matter. I tried to explain that the weekly increase should be spread over a week - not just a spike one time that week. I tried to explain to her that 1/2 of a 7.5 mg pill exceeded the 2.6 mg that the protocol called for. I tried to explain to her that I HAVE 4 mg pills and TWO a day would give me a much more appropriate increase.

Instead, I was told that this is how they do it. They have lots of patients, and this way has always worked for them. They have a lot of patients who can't handle taking two different doses of warfarin each day.

I even explained to her that there are other doses besides 7.5, 5 and 10 mg, and I went through the doses available. It seemed like news to this clinic.

I asked her why, if the only thing that mattered was a weekly dose (rather than trying to do the same dose every day), why I shouldn't just take 56 mg one day, and figure that I'm fine all week. She didn't have an answer for this.

So -- being confident that I'm already in - or very close to - range, I'll go with this clinic's suggestions. I took an extra 1/2 pill last night. I get retested on Thursday. My INR will probably again be around 2.5-2.7. My INR probably won't show any of the effects of last night's dose.

THIS IS HOW SOME CLINICS MANAGE THE INR OF THEIR PATIENTS. NEEDLESS TO SAY, I AM CONCERNED.

I hope that YOUR anti-coagulation clinic, if you use one, does a better job for you than this one probably does for its hundreds (or more) of patients.

 

[Madsometimes]

My anticoagulation clinic took laissez-faire to a new extreme. My INR was below 2.0 for two months, and they were so unconcerned, despite it being the high risk period of just after OHS. It took them until month 3 to offer bridging therapy, by which point they had finally upped my warfarin dose to the correct level, so I only needed the injections for a week.

The good thing about my clinic is that they are supportive of home testing (but not dosing). They even allowed me to home test when I was only in range for 20% of the time. They have me on 6 weekly tests now, so I'm really pleased that I can test in between times. I also think such long intervals between tests are risky.

 

[Protimenow]

BELOW 2.0 FOR TWO MONTHS -- and they did NOTHING? How often did they test?

That's worse than laissez-faire -- that's negligence.

 

[Madsometimes]

I was being tested weekly, and they were upping my dose very gradually starting at 5 mg a day, until they finally got me in range at 9 mg a day. When I expressed concern, they kept saying that it is very unlikely for aortic valve patients to get a clot because the blood is under high pressures. Well I have A-flutter too... I was too pst-operative to advocate for myself, so just crossed my fingers.

Three months in I got visual disturbances (amaurosis fugax for 10 mins, two episodes) and underwent a load of tests to see if it was a TIA. Nothing conclusive was found. Was it linked to poor anticoag management? Hard to say because lots of us have had vision problems.

The clinic was horrid anyway. People were herded in and out, there were not enough seats in the waiting room, and your INR and dosing was given out by a healthcare assistant in the waiting room, so no chance to speak to a qualified person.

 

[Bill B]

What I see a lot of here is personal bias about how things should be done. The fact is NONE of the variety of protocols have been throughly tested and proven to have better results than another, so, it's hard for me to criticize either a place that regards anything even marginally outside the target range as requiring an adjustment or a clinic that shows some flexibility. You have convinced yourself that weekly testing is better than monthly, but with all the variability in test results you have reported, you could just be making more unnecessary adjustments. When I was placed on warfarin, I talked to all my buddies in pharmacy who should know this stuff. I accumulated protocols from all over the country from major medical centers that have clinics, not just for people on public assistance, but who emphasize their ability to improve warfarin therapy with their guidelines. All of the protocols struck me as remarkably primitive and arbitrary. I was trained in and had a lot of experience in pharmacokinetics and pharmacodynamics, which is the science of how drugs are distributed in the body and how this relates to their activity. I did studies that used blood levels after a dose of some drugs to predict what the final result would be a week or so later, instead of just waiting to see. With these models I could tell with great accuracy after a single dose how the dose should be adjusted to achieve the desired result. Wafarin pharmacokinetics and pharmacodynamicws are on the complicated side, but I expected someone would have developed a kinetic model that would allow more accurate dosing. Despite the fact that warfarin has been in use more than 50 years and it has undergone a lot of study, the dosing protocols are not much more than trial and error. I was quite disappointed. On top of that when you look at how the target ranges were determined, you come away feeling you might have done better using a dartboard. Still, people have to feel they are doing something right by following one protocol or another. They have to have some approach to guide behavior. So, they pick one. And considering the narrow difference between therapeutic and toxic levels of warfarin (in fact, there is no difference - they heavily overlap), I don't blame anyone who thinks they have to be somewhat rigid even if it seems wrong from another vantage point. So, I don't split hairs with the nurse in my warfarin clinic even though I probably know 100 times more about this drug than she does and I would not have done things her way every time. Yes, it somewhat irks me too when I get the same questions over and over about diet , alcohol, etc., but I know the nurse is just following the protocol and for others these questions could be relevant. The clinic could have 100s of patients, so I don't expect personalized treatment, like recognizing that I am at some level of knowledge above other patients. That's unrealistic. I would have a problem if the clinic failed to contact me the day of or after a test result, but that has only happened once in almost 3 years. You have your own very specific ideas about how this all should be done, so you probably are not compatible with just about any warfarin clinic.

 

[Protimenow]

Bill:

There are a few things that I believe that I DO know.

I KNOW that I wasn't called back until the second day after testing.

I KNOW that I didn't make ANY changes to my dosing when I got a 2.7 on my meter.

I KNOW that when the clinic calculated a modification to my WEEKLY dose was supposed to be about 2.5 mg FOR THE WEEK, and then told me to add 1/2 of a 7.5 mg pill, that this exceeded her 5% WEEKLY proocol. I also am pretty confident that any spike from that 3.75 increase on FRIDAY would not be reflected in the INRs for a test made the folllowing Thursday.

THIS is what I was commenting on.

I also KNOW that, while testing once weekly, I'm seeing some variances from week to week that may not show up if I only tested monthly.

No - I probably am NOT compatible with just any warfarin clinic. I have problems with a clinic that is so closed minded that they FORBID home testing. I have problems with a clinic that is locked into the idea that patients should always take the same strength tablets (in my case, 7.5 mg) and the only modification that can be made is adding a dose of 1/2 pill, if needed. I have concerns that this clinic may not be effectively managing the hundreds of patients who come to them.

If I had my choice of clinics, I'd choose one that is flexible enough to allow me to do self-testing, and open enough for semi-regular confirmation with blood draws. I'd be more comfortable with a clinic that was flexible enough to make dosing adjustments based on daily dosage changes that bring the WEEKLY values up or down. I'd be more comfortable with a clinic that didn't say 'we've been doing it this way for ten years and never had a problem.' (The problems they had were probably cases where mismanagement caused their patients to suffer bleeds or strokes that the clinic didn't hear about. A doctor is great, if all his patients die, so there are no patients to come in and complain about crummy service).

The issue that warfarin and INR management are moving targets is a fact that all of us valvers have to accept. The frequency with which these targets move is one of the issues that I've got (weekly vs monthly testing).

 

[catwoman]

If I ever have to stop home-testing, I will find a clinic that uses professionals with CACP credentials.
Hope that day is a long time off......

 

[Superman]

I find my clinic to be very open to dialogue given the number of years I've been on warfarin vs. the number of years much of their staff has been managing/dosing. Not many nurses can match my nearly 22 years of experience (or for that matter my personal familiarity with how I respond). Heck, they still seem surprised when I remind them (for the 100th time) that I take my warfarin in the morning.

When my dose needs to be adjusted, the dialogue appears very open. They'll suggest something, and I'll either agree or offer a counter proposal which accomplishes the same basic adjustment either using pills they didn't know I had or levels out my weekly dose vs. their proposal. I find them to be agreeable. They do ask the typical list of questions, but I expect that. I'm guessing if anything happened to a patient and they couldn't provide documentation that those items were discussed - a malpractice attorney would have a field day with that clinic. Regardless of the experience level of the patient - even if we begged them not to ask the questions.

I use a home testing service that they partner with and calls results right into the lab. The lab works out what to do about the results. The home testing service "Real Time Diagnostics" just takes care of the supplies and tracking of results.

I really don't think public assistance has much to do with it. MediCare was one of the first "insurance" providers to be on board with home testing. Although I'm not sure about MedicAid. I found my private (employer provided) insurance to be very slow to hop on the band wagon. I was still stopping in for a needle stick up until the end of last year.

 

[Protimenow]

I'm glad to hear of your good experience with your clinic. I'm sure that there are many very good anticoagulation clinics.

The issue with 'public assistance' is one related to education levels, communication problems (language differences), lack of education, ability to follow recommended dosing changes, etc. Unfortunately, there ARE people on warfarin who probably couldn't handle being told to take a 5 mg dose on Monday, Wednesday and Friday, and 7.5 mg on the other days of the week -- and I think that this group may be the ones to which this clinic nurse was referring. I certainly don't want to sound racist or elitist, but I think it is this lowest common denominator that this clinic has to deal with, that is applied to all clinic patients.

For me, the clinic's primary value is the fact that I do, occasionally, get a blood draw, so I can validate my meter's accuracy.

And I suspect that for those who are mismanaged and who have negative 'episodes,' the idea of mismanagement by an anticoagulation clinic just doesn't cross their minds.

 

[chaconne]

Protimenow,

My clinic at Kaiser Permanente seems to do things similarly to the way you describe yours does. This makes it difficult for me to get any support from them on getting my own meter. My cardiologist seems a lot more supportive of this idea so I was thinking of getting him to prescribe me one.

My plan is to shadow what the clinic does with my own meter, testing more frequently as well and learn what works and what does not.

Since your goal seems to be just confirm your meter with an occasional blood draw, you could just play the game but secretly do whatever you want. There are so many variables to INR that it seems they would not know the difference.

 

[Protimenow]

I was able to buy my meter without a prescription -- and you will probably be able to do so, too. I doubt that Kaiser Permanente will pay for a meter if they're already seeing you in their clinic. I got my meters on eBay (and from Alere), and with the exception of a meter that was described as not working, all of them have.

Yes, I'm managing my INR - but taking the clinic's advice if I'm scheduled for a re-test within a week or so. My last blood draw was a 2.42 - and a one time increase of dosage probably won't show up when I'm tested a week later. It'll probably just help prove my point to the clinic - if they'd even listen.

I plan to continue to test weekly - with the occasional blood draw to check against the meter.

 

[yotphix]

If I ever have to stop home-testing, I will find a clinic that uses professionals with CACP credentials.
Hope that day is a long time off......

If it's more than a few years off, I bet you'll almost certainly be able to download an app for your smartphone, which will include a small device (arriving by mail with test strips) that replaces your Roche meter, BUT also has a dosing calculator. A really good one will allow you to input your diet and exercise variables for the sake of tracking too.
Let's all cross our fingers!

 

[chaconne]

I was able to buy my meter without a prescription -- and you will probably be able to do so, too. I doubt that Kaiser Permanente will pay for a meter if they're already seeing you in their clinic. I got my meters on eBay (and from Alere), and with the exception of a meter that was described as not working, all of them have.

I set up a Health Care Spending Account (HCSA) this year, through my work benefits, and set aside money for a meter. It's my understanding that I can't get reimbursed unless I have a prescription. I hope I can get my cardio to prescribe it, then buy one on Ebay or Amazon, and get the HCSA benefit.

 

[Protimenow]

It's a good idea to have an HCSA - but your insurer may not reimburse you unless you buy your meter (in other words, probably overpay) from an approved vendor. If the cost from an 'approved' vendor, minus your deductible is less than you'd pay on eBay or Amazon, you should certainly go for it. (It doesn't sound like you'll have any trouble getting a prescription for a meter, but not all doctors are equally enlightened).

 

[Protimenow]

If it's more than a few years off, I bet you'll almost certainly be able to download an app for your smartphone, which will include a small device (arriving by mail with test strips) that replaces your Roche meter, BUT also has a dosing calculator. A really good one will allow you to input your diet and exercise variables for the sake of tracking too.
Let's all cross our fingers!

We may be almost there already. The meters (not having a CoaguChek XS, I'm not sure about Roche), all have connections to a data port. It should be able to get the date from the meter into the SmartPhone. (Perhaps soon, they'll build WiFi into the meters). An easy connection to the meters would be great -- but I suspect that with a little twiddling with connectors, a meter can already be connected to a smart phone. The applications shouldn't be terribly difficult to write -- probably a lot like the spreadsheet that I keep on my computer now - but with data automatically transferred from the meter.
With the right additional devices, you may even be able to get your pulse and blood pressure into the smart phone. It may even be possible to get a rudimentary EKG. It may even be possible to get a cholesterol screen into your phone.
For a lot of this, the technology is pretty much there today -- they just don't seem to have connected all the dots. (Plus, I guess, the medical establishment may not be all too happy about letting the great unwashed take control of their INR, Cholesterol, Blood Pressure, and other factors).

If I was a programmer, I'd try to throw together an app that did the calculation, etc. Perhaps the real issue with something like this is potential liability -- if ANYTHING goes wrong, and a patient blames the dosing calculator, there could be some real headaches.

 

[karla]

Do you have to go through an anticoag clinic? I did for the first month after surgery and then it was turned over to my PCP. I did not like the way my PCP's nurses were managing my dosing so i had a frank discussion with my PCP that also proved to him that I knew what I was talking about. I am now in the second week of self dosing and I am hopeful to get in range and stay there for more than a week. We agreed that I would let him know when I changed the dose so he is up to date on what i am taking and why. Is something like that a possibility for you, perhaps?

 

[Protimenow]

You most certainly do NOT have to go through an Anticoagulation clinic or a doctor who handles the testing and dosing. I've been on Warfarin for decades, and have had rather spotty anticoagulation support for much (most) of that time. I've been self testing, and self dosing for three years. Aside from my concerns about my meter being 'fooled' by an OTC that I was taking, I've been able to successfully manage my dosing.

I keep a spreadsheet with the relevant information - weekly dose, date, any unusual factors that may have impacted the INR, and a large field for comments. I have an MD who prescribes the warfarin - and now the clinic also prescribes.

The main value of having a clinic, to me, was the lab tests that help me to check the accuracy of my meter.

I follow the clinic advice - although I seldom agree with it - and tomorrow, I'll probably demonstrate to them that a one time dose increase last friday will NOT show up on the following Thursday.

If you test regularly, don't make drastic dosing changes, and can follow one of the dosing protocols, you should be okay as a self-tester/manager.

 

[chaconne]

I follow the clinic advice - although I seldom agree with it - and tomorrow, I'll probably demonstrate to them that a one time dose increase last friday will NOT show up on the following Thursday.

I've had my clinic use this "trick" on me a few times now - of increasing the dose once, a week or two before a re-test. I'm wondering if they do it just to protect us from a momentary dip in INR, that they are expecting to go away with time by itself?

Another possibility is that INR randomly "drifts" and doesn't just stay on one value, even if the dose is nearly perfect. I don't have enough experience to even know if this is possible, but if it is true, the temporary increased dose would "kick" it up to a more favorable value.

What do you think?

 

[Protimenow]

This clinic seemed to feel that adjusting based on the 'total' weekly dose was enough to have an ongoing effect. Using this logic, a one time dosage increase on a Friday would show up in an INR on the following Thursday. Extending this logic even further, it would seem that a single dose of 52.5 mg on a Friday would keep a person safely anticoagulated all week.

I tried to convince them that adjustments should be made as a minimal daily - or twice a week - addition, rather than a one time large addition which would have no effect a week later, but they wouldn't listen.

Yes - there are random 'drifts' in INR, often with little or no apparent reason. The fact that my dosage was adjusted AT ALL last week was rather surprising - my meter gave me a 2.7; the lab returned a 2.42. According to the clinic's protocol, this was 'low' (my range is 2.5-3.5). Ignoring a possible margin of error that was greater than the 0.8 that my INR was 'low," I would have probably opted to do NOTHING and see if the INR 'drifted' back up with no intervention.

My standard dose is 52.5 a week. A 5% adjustment would have brought me to 55.1. I offered to take two 4 mg pills, which would bring my weekly dose to 56 (almost dead on with the 5% adjustment), but they weren't interested.

IN answer to your question - I really don't think that a one time increase would show up in an INR test a week or two later.

 

[chaconne]

IN answer to your question - I really don't think that a one time increase would show up in an INR test a week or two later.

My INR was low (2.0 in a 2.5-3.5 range) 1.5 weeks ago, so they had me do a 1-time increase of 2.5 mg (from 37.5 mg/wk). Testing a week later (last Friday), my INR was up to 2.5. They could say it was because of the extra 2.5mg the week before. It seems difficult to prove or disprove, given so many factors can affect INR, but if that "trick" experimentally works for them on a consistent basis...

How did your recent experience turn out? Did the increase "work" for you?