Warfarin woes

[DebbyA]

So far, for me, warfarin therapy hasn't just been as easy as taking a pill. Now starting week 9 after surgery, my INR is still not in range. It has varied within a 1.4-1.7 range. Last week the cardiologist prescribed thyroid bloodwork (don't have results yet), but I feel that is just a guess. I asked for a more aggressive approach and ended up giving myself Lovenox shots over the weekend. Today's INR: 1.7. Still waiting to hear further instructions. This is pretty frustrating.

 

[Freddie]

Don't despair Debby, I think it took me forever (like 3 months) to get in range.

What is your range?
What is your dosage you are taking now?
Maybe there's something in your diet that is reacting to warfarin.

Also, remember, the more active you become your dosage may have to be increased.

Sorry for all the questions, but maybe we can help you get in range and/or you can use this:
http://www.pace-med-apps.com/CoumCalc.htm

 

[pellicle]

Debby

sorry to hear of your distress

So far, for me, warfarin therapy hasn't just been as easy as taking a pill. Now starting week 9 after surgery, my INR is still not in range.

for starters you're still in early days. There are lots of things happening to your body and its also trying to recover from a severe injury (sure, its a surgical wound, but its an injury none the less).

I would say just be patient and it will likely settle in time. I was freaked out with the incessant changes and alterations and blood samples when I started out on Wafrarin and my daily dose went from 4mg steadilly up to nearly 8mg over the course of the first 3 months.

I hate needles and felt like a pin-cushion.

It has varied within a 1.4-1.7 range. Last week the cardiologist prescribed thyroid bloodwork (don't have results yet), but I feel that is just a guess. I asked for a more aggressive approach and ended up giving myself Lovenox shots over the weekend. Today's INR: 1.7. Still waiting to hear further instructions.

what has your dose been?

Actually its good (although frustrating) that they are weening you into it for the majority of complications that stem from warfarin therapy appear early (not late it would seem) and hitting you hard onto it for starters seems to make it worse

I was just reading a journal article about the delays in thrombic effect

its a bit technical but what I'm saying is that these things happen, and while it may be puzzling even for your medical team there are many factors which take time to settle.

So hang in there and scream out any questions / frustrations as you hit them and hopefully someone here will be able to help even if its only to offer moral support.

Best Wishes

Oral Anticoagulants: Mechanism of Action, Clinical Effectiveness, and Optimal Therapeutic Range


The Antithrombotic Effect of Warfarin

The antithrombotic effect of warfarin is conventionally
viewed as being a consequence of the reduction of all four
vitamin K-dependent coagulation factors. However, there
is evidence that the anticoagulant effect and the antithrombotic
effect of warfarin is dissociated during the
induction phase of treatment. Using a stasis model of
thrombosis in rabbits, Wessler and Gitel72 reported that
the antithrombotic effect of warfarin requires 6 days of
treatment, whereas an anticoagulant effect was observed
after 2 days. This finding suggests that during the induction
phase of warfarin treatment, the reduction of clotting
factor(s) responsible for prolonging the PT in the first 2
days are less important for the antithrombotic effect of
warfarin than those that are reduced after 4 days or 5 days.
This is pretty frustrating.

 

[DebbyA]

Thank you both for your replies. It really helps to read that it took you several months. Did you experience having your INR stay stubbornly stuck while the dosage increased? They started me on 3.5, then added 7.5 a couple of days a week, variations of those, then some doses of 11.25 plus 7.5.--so I can't really give my dosage because it has varied so much. I was being tested weekly until I made this fuss. I had been sort of concerned about not being in range, but frankly too busy to focus on it. Then I asked the rehab cardiologist about it and he was pretty convincing about how much I should want to avoid a stoke, and felt I should be in range by now. (The scene in rehab, where some people have to be helped onto the treadmill, reinforced his picture.)

I think part of the frustration is that this office is run so that I seldom communicate directly with the cardiologist, or even a nurse. It is the techs who hear me, go talk to the cardiologist, then get back to me. I keep thinking of the Wizard of Oz.

 

[Superman]

First thing I'd be apprehensive about is the alternating low and high doses. But it did take a what I recall being a good six months to get back to where my dose was consistent, and a year to get to my pre-second surgery dose.

I just don't like seeing daily doses ranging from 11.25 down to 3.5. I find it very helpful to view the dosing at a weekly level and trying to even out the daily doses. So if they want to bump you from 28 - 35 mg weekly, then change your daily dose from 4 to 5, not throw in a couply 7.5 doses with the 4's. But I also understand you're very early in the process so right now the battle is just to get you into range.

As pellicle said - your body is in full on recovery mode. Your metabolism is going to do some strange things before it settles down. I couldn't get my heart rate below the high 90's for weeks after. I couldn't eat anything sweet for over two months because of the awful taste. I couldn't eat anything cold for months because my teeth hurt like crazy (think I locked on the tubes in my mouth while I was out of it).

Things will regulate in time.

 

[pellicle]

Debby


I also agree with Superman

I just don't like seeing daily doses ranging from 11.25 down to 3.5.

not that I have significant evidence for that but it seems to me that when my dose was varied frequently my INR didn't settle down. Personally I prefer to keep my dose within a gram day to day (mostly half gram variation or same dose if I can).

was being tested weekly until I made this fuss.

weekly is good (imo), what is it now?

I had been sort of concerned about not being in range, but frankly too busy to focus on it

I understand ... but don't be too concerned, especially if you are on heparin too.

Are you still on heparin?

 

[tom in MO]

It took me several months to stabilize after replacement surgery. I was out more than in.

Recently, I've gone low like you and my clinic tried to up me by increasing the next dose assuming I would go in range 2-2.5 and stay there. Not so. We tried twice, testing every week (really 10 days, I'm a bad patient) and my INR increased to 1.8 but not yet the magic 2.0. Now they increased my dose permanently from 33 to 35 mg per week (5mg per day now; was 5 mg for 5 days with 2 days at 4mg). I too would be concerned about big changes in dose rather than an overall increase.

Occasionally I have questioned what my dosage was or the timing of the next test interval. The nurse always checked and twice they changed their orders after I asked. Push them if you need to. Ask them to explain the logic behind the orders.

 

[MarkU]

Just to support what the others are saying, it can take several months for your INR to stabilize post-op. As I recall, it took mine just over three months.

My target range is 2.5-3.5 and I've been pretty stable over the past 14 years taking 5mg per day. If I'm in range they test me every six weeks, but if I drift out, it's every two weeks until I'm back in range again. Due to my consistent history, when I drift out of range my lab is reluctant to make any drastic changes in my dosage. At worst, they've had me skip a day or go up to 7.5 mg one day a week.

I'll also add that we've never been able to correlate any changes in my INR to any changes in diet, activity, etc. Sometimes I just will drift out of range for no obvious reason.

Mark

 

[yotphix]

Hey Debby,
I had a similar experience when I was starting warfarin, though I was technically within range some of that time, I was at the ragged bottom edge of it, and dropping out. I was constantly begging the docs to give me a higher dose(They had been creeping up, first 2, then 3 then 5 mg daily, then adding an extra 1mg every second day etc.) , and not to vary it, since I find it simply absurd to take wildly different doses of a medication and not expect swings in both the concentrations of it, and in it's effect and efficacy.
I ended up settled for about a year on a dose of 9mg daily, which then increased to 10, and finally 11 during year two. Since then, I've been stable and in range on an 11mg daily dose for three years.
Back at the beginning, the difficulty in getting the managers to do their job the way I'd have liked them to (they ultimately control what prescriptions I get) was what led me to get a meter, and find a compliant physician who trusted me to decide for myself, and will write me whatever prescription I deem necessary (only for warfarin!).
I know that it is frustrating, and a little frightening, but persistence will pay off, and so will self advocacy. You'll get there!
P

 

[Protimenow]

I almost hate to admit it, but it's been 22+ years since I had my surgery. I don't recall significant issues with regulating my dose all the way back to 1991, but it didn't seem like TOO BIG a problem doing so.

I'd like to echo some of the advice that others have already given. It's a good idea to test weekly. If you take different doses on different days, your INR will be different depending on which day you test it -- it's best, if possible, to maintain the same daily dose.

I also suggest that anyone who is able to self-test SHOULD get a meter and self-test.

Hang in there -- your INR will stabilize and you should be able to get on top of the situation.

 

[DebbyA]

Once again, thank you all for the added information and reassurance. It really helps. I was waiting for the thyroid test results before posting. (I know they had the report from the lab Wed am, and now mid-pm Fri they still haven't called.) My INR Wed, after the 6 Lovenox injections was 1.8--up from 1.7, but not sure it was worth the blood and bruises. Their usual procedure is to have me do a day or two at a slightly higher dose, then resume the regular dose. Both of those have also been gradually adjusted upward, not jumping from 11.25 to 3.25 to 7.5. This time the instruction was 11.25 on Wed, then 7.5 until next Wed check.

 

[DebbyA]

Just got a call from the cardio's office. They were using the recalled strips http://www.valvereplacement.org/forums/showthread.php?42785-InRatio-2-strip-rrecall-important

My new instruction is an order for lab blood test Monday and go to emergency room if anything bleeds (paraphrasing loosely).

 

[Protimenow]

Again, switching the doses that drastically can make a diffference in your INR, depending on what day they test your INR. It's much more reasonable to try and keep a steady dose (although it probably makes sense to get your INR at the high end, so that it's not dangerously low, and then work with reduced doses until the correct range is reached.

Do those recalled strips have the PN99008G2 on them? Are the words Professional Test Strips on the foil pouch?

 

[DebbyA]

Protimenow,
I was trying to state that the doses weren't being switched drastically--unless you consider 7.5 to 11.25 to 7.5 drastic? For me it's a tablet or a tablet and a half. (I know they come in different measures, but have only been prescribed 7.5 so far.)

That discussion may be moot once I get my 'real' INR from the lab.

The cardio's office said the strips were definitely in the recall range, but I have no details about them.

 

[Freddie]

Hi Deb,
What is the desire range you are aiming for? (2.0 to 3.0 or 2.5 to 3.5) I just did a quick calculation with the online INR calculator, without knowing I used the 2.0 - 3.0 for your range - the result was 8mg/wk.

If I'm reading this right, I think most of us would consider 7.5mg to 11.25mg is rather a drastic increase for this type of medication. Even if it's one 'extra tablet'.

Let me try to explain, bare with me:
This is just an example - if you were to take 11.25 on Monday (and 7.5 Tues, Wed) and get tested either on Thursday or Friday, the result would be the dosage you took on Monday and might be a little on the high side causing the clinic to decrease your dosage to 7.5. On the flip side, if you took 7.5mg on Monday (Tues, Wed) and get tested on Thursday or Friday your result would be on the low end of your range.

Going 'up' and 'down' with INR results is what we call the "roller coster" and is caused by drastic changes in dosages.

Now if you were to average out these two dosages and take 8mg or 9mg/wk (maybe even alternate the two dosages) you might be closer to your target range.

What mg of pills do you have (1's, 2's, 5mg) and have you ever been 'in range'?

 

[DebbyA]

Freddie--thanks for all your hard work, but yesterday I posted that my cardio is using the recalled strips, so NONE of the readings I've been getting are likely to be accurate. Basically, after the lab results Monday, I'll be starting over I guess. According to the Alere letter, true results were 3.5-12 higher than Alere results. So I'm probably way above my target range. If the hospital was also using the recalled strips, I may never have had accurate information.

Target range is 2-3, tablets are 7.5.

 

[Freddie]

If that be the case, no more Lovenox injections, but don't let anyone, including yourself panic if and when your results are 3.5. Lab's should have a variance of +/- of .2 (that's the rule here in Canada), and adjust any new dosage slowly by decreasing by 5% and retest in 3 or 4 days.

 

[Protimenow]

The problem was probably NOT with ALL of the recalled strips. If this was the case, there would be a lot more than the 9 (or 12) reported cases of problems. Having an error that is THAT large is very problematic, and I would expect that most people would notice if their INR was suddenly 10 or 12 --- bleeding and bruising, bloody urine, and other signs would signal problems.

Your INR may have been underreported, perhaps, but I don't think that the degree of underreporting would have been tremendously high. (In my case, testing with the InRatio strips, I found that the InRatio and InRatio 2 meters that I was testing with ALWAYS gave results that were equal to or higher (sometimes much higher) than the lab results - the exact opposite of the issue that caused the recall).

And, as Freddie stated, the difference between 7.5 and 11.25 is a MAJOR one, and it WILL change your INR from day to day. Try, if at all possible, to take the same (or almost the same) dose every day.

 

[DebbyA]

In range at last--but just barely--lab result is 2.0. (Also my thyroid test results were all normal.) For now my instruction is to take 7.5 daily, then recheck at the lab in a week.

Protimenow, your post "The problem was probably NOT with ALL of the recalled strips..." may be correct in my case.

Since I'm not self-dosing, and don't even get to talk to the person(s) making the ruling, I'll have to ponder how to handle your and Freddie's point about the difference between 7.5 and 11.25. If I'm not being tested daily, and as I think I read in another thread, the real aim for dosage is a weekly total, would it matter that much as long as the larger dose isn't the day before the check?

 

[pellicle]

Hi Debby

In range at last--but just barely--lab result is 2.0.

that's good news

(Also my thyroid test results were all normal.)

and that's better news

For now my instruction is to take 7.5 daily, then recheck at the lab in a week.

seems reasonable ...

If I'm not being tested daily, and as I think I read in another thread, the real aim for dosage is a weekly total, would it matter that much as long as the larger dose isn't the day before the check?

personally I am not a fan of the weekly total stuff but (meh, whatever) and believe strongly that daily equilibrium is important to getting a good level.

Moving up slowly is good because then the risk of overshoot is much less ... keep at it and just think "in two years I'll have forgotten about all this "