Coumadin clinic

[mecretired]

I had surgery May 2010 to replace my ascending aorta, aortic valve and aortic root with a St Jude grafted valve. My inr range has always been 2.5-3.5. My Coumadin clinic insists that I only be given 5mg warfarin. I’m supposed to split pills and then take different does on different days to get the weekly total to come out right. I test myself weekly with Coaguchek xs. My inr has been 3.4, 3.5, 3.5 and 3.6. I have been taking 7.5 mg/day. I want to change to 7mg/day. Coumadin clinic wants me to take 7.5 for 6 days/week and 5 on 1day. My cardiologist intervened several years ago and I got 1 mg pills. Now Coumadin clinic is refusing to give me anything but 5. I left a message for my cardiologist. Meanwhile I am really stressed. Does anyone else have this problem? Or even understand why? I get the feeling that the RN I have to deal with just wants to exert her control over me.

 

[tom in MO]

I don't know why she would not give you different strengths. Could it be she dislikes renewing prescriptions and 2 prescriptions is 2x the work in renewing them? It could be some other doctor's order to try to keep it to one "'script if possible." You could tell her that the more simpler dosing with 1mg and 5mg would be easier for you. You could bypass the clinic and ask your cardio's nurse for the prescription dose that would work best for you.

I do 4.5mg Sun, M, W, F and 4.0mg Tue, Thur Sat. I asked for 1mg and 5 and mix/match as needed. They sent me home with 2 and 5 mg, but I find 1 and 5 mg works better for me. My coumadin clinic changed it at my request. I asked for 60 pills instead of 30 and they changed that too.

 

[Superman]

I get my prescriptions from my Cardio. My clinic just tracks the results that I give them. I guess I don’t really know what they do other than give me access to a machine that I’m blessed to have my insurance pay for.

Anyway, I get 5’s and 1’s from my Cardio, which I find to be perfect for my needs. I’m alternating 5mg’s and 6mg’s daily right now. Never an issue as long as I concede to an echo periodically (I’ve been granted two years leave at present).

 

[pellicle]

My Coumadin clinic insists that I only be given 5mg warfarin

force you point, or change clinics.
I have 1's 3's and 5's on hand so that I can carefully titrate the right dose. I'd use that exact phrase to them, enlist your doctors assistance on this matter to bring weight to the table. My current dose is 6.5mg, but it has on occasions varied from that to 8mg. So presently I can make 6.5mg from

• 2 x 3mg + half 1mg
• 5mg + half 3mg

Having this variety of selection makes an alteration of dose (say I need to swing back up to 7mg or 7.5mg) simple. Further, not only does having the variety assist with dose titration it allows me to maintain my stock of stuff and not have any wastage (which may not bother some people because the costs are relatively small).

Best Wishes

 

[mecretired]

force you point, or change clinics.
I have 1's 3's and 5's on hand so that I can carefully titrate the right dose. I'd use that exact phrase to them, enlist your doctors assistance on this matter to bring weight to the table. My current dose is 6.5mg, but it has on occasions varied from that to 8mg. So presently I can make 6.5mg from

• 2 x 3mg + half 1mg
• 5mg + half 3mg

Having this variety of selection makes an alteration of dose (say I need to swing back up to 7mg or 7.5mg) simple. Further, not only does having the variety assist with dose titration it allows me to maintain my stock of stuff and not have any wastage (which may not bother some people because the costs are relatively small).

Best Wishes

I have left a message for my cardiologist. I would love to change Coumadin clinics but this one is associated with my cardiologist. I love my cardiologist. He is the best in the area. He came through once before for me on this issue. Hopefully he will again. I’ve never heard of any other Coumadin clinic who won’t allow their patients to have more than one strength of warfarin tablets. She won’t even give me a reason. It stresses me to the point where I won’t just give in.

 

[pellicle]

She won’t even give me a reason. It stresses me to the point where I won’t just give in.

I personally find that the lower level of functionary in medicine the more bureaucratic, unintelligent and authoritarian they are. I think that the key is intelligence, because they're chosen to do repetitive and unimaginative jobs and relied upon to not make (many) errors.

I hope you get it sorted out.

 

[Brinntache]

1. Why is your INR range so high? My clinic aims for 2.5, within a range of 2.0-3.0.
2. I get 2.5mg pills, which are pretty easy to split for 1.25mg.
3. I question the directives your nurse has been given. Is she being told to use only 5mg to simplify inventory? Reduce costs? Though I can't imaging that costs can be that different, but bean counters be bean counters.
4. like others, I would push the point.

 

[Superman]

1. Why is your INR range so high? My clinic aims for 2.5, within a range of 2.0-3.0.
2. I get 2.5mg pills, which are pretty easy to split for 1.25mg.
3. I question the directives your nurse has been given. Is she being told to use only 5mg to simplify inventory? Reduce costs? Though I can't imaging that costs can be that different, but bean counters be bean counters.
4. like others, I would push the point.

2.5 - 3.5 is a fairly common range. That’s what I typically target. If you look at charts of adverse outcomes, there’s very little difference in adverse events between 2 - 4. Armed with that info, I prefer 2.5 - 3.5 because it gives me some breathing room on either side of my range were I don’t feel like I have to worry at all. If I get below 2, then I start to worry a bit, so there’s no worry free cushion in a 2-3 range.

 

[mecretired]

1. Why is your INR range so high? My clinic aims for 2.5, within a range of 2.0-3.0.
2. I get 2.5mg pills, which are pretty easy to split for 1.25mg.
3. I question the directives your nurse has been given. Is she being told to use only 5mg to simplify inventory? Reduce costs? Though I can't imaging that costs can be that different, but bean counters be bean counters.
4. like others, I would push the point.

My range was set at 2.5-3.5 when I was discharged after surgery as I was n afib. I converted in a few days but they kept my range. They have talked recently about changing it to 2.0-3.0. I can’t get a reason from the Coumadin clinic but I definitely intend push the issue. I’m still waiting on a reply from my cardiologist.

 

[mecretired]

2.5 - 3.5 is a fairly common range. That’s what I typically target. If you look at charts of adverse outcomes, there’s very little difference in adverse events between 2 - 4. Armed with that info, I prefer 2.5 - 3.5 because it gives me some breathing room on either side of my range were I don’t feel like I have to worry at all. If I get below 2, then I start to worry a bit, so there’s no worry free cushion in a 2-3 range.

That’s what I was thinking when my cardiologist suggested changing my range from 2.5-3.5 to
2-3. We decided to keep it at the higher range.

 

[pellicle]

Why is your INR range so high? My clinic aims for 2.5, within a range of 2.0-3.0.

when I was in my meeting with my surgeon he said he wanted me to maintain my INR between 2.2 and 3

Soon after reading posts here I started to look at the journals and the guidelines of them, so from:

2021 ESC/EACTS Guidelines for the management of valvular heart disease
Developed by the Task Force for the management of valvular heart disease of the European Society of Cardiology (ESC) and the European Association for Cardio-Thoracic Surgery (EACTS)

Chapter 11 Prosthetic valves

notably following on from that (and due to page sizes I had to clip separately) is this table

which suggests a target of 2.5 ... but my surgeon probably likes to hedge out risk just that bit more and thus suggested 2.2 as my lower "move it on up boy" marker. No doubt he knows this article (I've never asked him because if you knew him you'd know why I don't question reasons), so annotating "that graph" I often cite:

as you can see the set of numbers below 2.0 steps up in incidence per 100 years and as you probably know INR determination is a bit fuzzy, certainly 0.2INR units is a reasonable boundary of "likely margin of error" ... so by staying at 2.2 (or even 2.5) as a lower limit seems prudent, especially in the face of

• his uncertainty of INR testing frequency
• patient compliance (he didn't know me much then) and the known rapidity of drop of INR from a missed dose
• the more pernicious results of low INR vs higher INR
• the small boundary to the left of that graph

After all in terms of RISK vs RETURN what is the gain of being INR = 2.2 vs 2.6

this is my 2021 data

an over event is identified as > 3.2 and an under event is identified as < 2.0

Best wishes

 

[Chuck C]

I can’t get a reason from the Coumadin clinic but I definitely intend push the issue. I’m still waiting on a reply from my cardiologist.

I'm glad that you intend to push the issue. Not only do I think it important that you get the right mix of warfarin pills, but someone's head needs to roll. When you mess with forcing people to be out of range because of some non-medical based policy, lives are at stake.

So, I hope that your cardiologist straightens them out and gets you the mix of warfarin prescriptions that you need and also encourages the clinic to get to the bottom of this strange policy. Seriously, any cardiologist should understand that a coumadin clinic that acts this way needs to clean shop or be kicked to the curb.

It is hard to comprehend how a clinic could be so obtuse. I am fortunate that I own my own testing device, so I don't have to report to a coumadin clinic. I fired them when I found out they charged my insurance $505 every time I self-reported my numbers to them. I also get my warfarin prescriptions directly from my cardiologist. I just send him a private message through the UCLA portal, telling him the dosages I need and why, and he personally replies, usually within 24 hours, confirming that he filled my prescription request. It seems that a few of the clinics have some fools in the chain of command making it hard on patients and putting them at risk.

 

[ScribeWithALancet]

force you point, or change clinics.
I have 1's 3's and 5's on hand so that I can carefully titrate the right dose. I'd use that exact phrase to them, enlist your doctors assistance on this matter to bring weight to the table. My current dose is 6.5mg, but it has on occasions varied from that to 8mg. So presently I can make 6.5mg from

• 2 x 3mg + half 1mg
• 5mg + half 3mg

Having this variety of selection makes an alteration of dose (say I need to swing back up to 7mg or 7.5mg) simple. Further, not only does having the variety assist with dose titration it allows me to maintain my stock of stuff and not have any wastage (which may not bother some people because the costs are relatively small).

Best Wishes

Ditto for me. The 1 mg, 3 mg, 5 mg works well for me.
If you have to, you can even split the 1 mg into halves and quarters.

For two weeks, I was taking 15.75 mg per day to fine tune my INR in response to changes in my melatonin and Vitamin K2. Now I am taking 15.0. Switching dosages was easy with that combination of pill strengths. Just add the dust and fragments into the correct days when you split them and you can create almost any minor adjustment you need.

It took me a couple months to convince my HMO insurance plan's Coumadin clinic, I finally had to convince my internist first by submitting a paper with the math for the various quantities and then pointing out that Coumadin/Warfarin have right handed and left handed molecules with different half lives so taking the same amount every day at a more precise level allowed better control of what the INR measurement would be.

Pellicle is right, if you can't persuade them, you may have to switch clinics and or doctors.
Being able to fine tune dosages and using a home meter is the key to staying in range.

Walk in His Peace,
Scribe With A Lancet

 

[Protimenow]

I get 1s, 4s, 5s, and 7.5s. I can make pretty much any dose with these. A few times over the years - even when I was self-testing and self-managing, I've HAD to go to 'coumadin clinics.;

If you're able to self-test, I suggest that you do. If you're concerned about dosage management, there are resources (especially Pellicle) who should be able to help.

I don't like the idea of alternating doses - this skews the results of testing, depending on which day you test. If I was told to take 5 mg one day and 6 mg the next, I would get 5 mg pills and 1 mg pills. Each day, I'd take one 5 mg and 1/2 of a 1 mg pill. Depending on the week you're considering, the total weekly dosage will vary by about 1/2 mg per week. This isn't a big deal.

If possible, I shoot for the same dose daily.

I've been self-testing (and self-managing) for 12 1/2 years. I have a new cardiologist, and even though there's a 'coumadin clinic' in his office, he believed me and didn't force me to go to his clinic. 'You know what you're doing. Keep doing it.'

It sounds like you need a new clinic - or to grab a handle on things and test and manage yourself, if you're able to and comfortable with it.

 

[mecretired]

I still haven’t heard back from my cardiologist or Coumadin clinic. I do self test and am quite capable of self dosing. However I’m fairly sure my cardiologist would not go along with that. Medicare and my insurance pay for the testing and I know they wouldn’t go along with self dosing. I see my cardiologist on March 8 and we will have it out then. I’m certainly not comfortable with splitting pills. Coumadin clinic wants me to do 7.5 for 6 days/wk and 5 in Wednesday. Makes absolutely NO sense to me. I test weekly on Thursday. So the 5mg from Wednesday won’t show up in Thursday’s test. My range is 2.5-3.5 and I am usually closer to the 3.5. So if I don’t hear from Coumadin clinic or cardiologist I will do what “Marty” wants and take issue up with my dr in March. I’m still hoping they will call me. Thanks for everyone’s input. Glad to know I’m not the only one who thinks my Coumadin clinic is crazy.

 

[Chuck C]

I do self test and am quite capable of self dosing. However I’m fairly sure my cardiologist would not go along with that.
Medicare and my insurance pay for the testing and I know they wouldn’t go along with self dosing.

If you do decide to self dose anyway, I promise not to snitch on you.

If their obtuse dosing messes you up, that stubborn nurse and the Medicare establishment will not be the ones that have to live with the potential negative outcome. You will.

I have confidence that you will get this sorted.

 

[Amy]

I’m certainly not comfortable with splitting pills.

Did you mean that you ARE comfortable splitting pills? Sorry, it’s 4 am, I may have missed something....

I also (briefly, thank god) had a Coumadin clinic that wouldn’t prescribe different dosages and insisted I add or subtract half a 5 mg pill a week depending on whether I was above or below range... I have since discussed this with a couple pharmacists who suggested that

1. Coumadin clinics are trained to think that you’ll get all confused if you have more than one dosage amount.
2. The 5 mg pills are more commonly prescribed than other dosages, so they are cheaper than say 6 mg or 1 mg.

Incidentally, I have spent 30+ minutes just waiting on the phone with a Coumadin clinic ‘technician’ while she tried to calculate what my new dose should be once when I was out of range. This when I was only allowed 5 mg pills... I wonder if a third reason for this difficulty getting other dosages could be the technician needing to think differently about calculating daily dosage?...

Maybe your clinic or cardiologist would be more supportive if you told them exactly how you plan to calculate a new dose when you’re out of range. (That’s IF that’s the plan - of course, they could still give you 1 mg pills to have on hand while ‘managing’ your INR for you (telling you how much to change warfarin dosage by when out of range) - but even if you want to rely on letting them tell you how much to adjust by, it might be good to calculate it yourself and then compare that to what they tell you.

I thought I would be able to rely on my Coumadin clinic, and guessed they’d be better at it than me (especially in the beginning); but I ended up having no choice but to self-manage after they NEVER called me back, on two occasions, to tell me the dosage change; and they were just generally too incapable, unresponsive and disinterested. It’s like someone else on this forum (probably Chuck C or pellicle) has put it - it matters more to YOU than to them because it’s your body and your life - your consequences if it’s not done correctly. Having said that, if they are capable and will prescribe 1 mg pills and you want to rely on them rather than self-managing, I get that too. We are all in different circumstances. I wish you luck.

 

[RAS]

Coumadin clinic wants me to do 7.5 for 6 days/wk and 5 in Wednesday. Makes absolutely NO sense to me. I test weekly on Thursday. So the 5mg from Wednesday won’t show up in Thursday’s test. My range is 2.5-3.5 and I am usually closer to the 3.5

It's been a long time since I used a coumadin clinic. They started me on 5mg pills (maybe that is a standard?), but there were frequent dose changes & splitting pills. I don't recall if they ever gave me different size pills, but based on the notes I logged back then, looks like I only had 5mg to use in whole or half.
I don't miss the constant changes in dosing directed by the clinic and the roller coaster INR as a consequence. They seemed to like to make changes even when I was in range, but on the margins.

Your clinic's recommendation adds up to 50mg per week. Your original post said you wanted to do 7mg/day = 49mg week which is 98% of the dose recommended by your clinic. I agree that makes sense. My personal experience is a consistent daily dose leads to a more consistent INR. Given you are usually closer to 3.5, I would expect 49mg week would keep you in the 2.5-3.5 range. Keep pushing! I hope you get a reply and support from your Cardio soon to get this resolved.

 

[mecretired]

If you do decide to self dose anyway, I promise not to snitch on you.

If their obtuse dosing messes you up, that stubborn nurse and the Medicare establishment will not be the ones that have to live with the potential negative outcome. You will.

I have confidence that you will get this sorted.

I find your comment almost amusing because I have on occasion self dosed and just lied to the Coumadin clinic about my inr and my dose. But you promised not to snitch. Currently I only have 5 mg pills and no script for 1mg pills. So she is in control right now. If I don’t hear back before my appointment on March 8 I will definitely have it out then.

 

[Protimenow]

The only problem that I had with splitting pills was years ago, when I split the pills in the bathroom while I was preparing my daily dose.

A few grains (teeny little particles that I couldn't even see), fell onto the floor during the split. My dogs apparently picked these up on their feet, and when they licked their feet, got tiny doses that were enough to raise THEIR INRs. There was a bit of bleeding if they got cut.

I moved my pill splitting activities to a safer area, where any particles wouldn't fall anywhere that it mattered, and had no issues ever since.

My crazy HMO insisted that I use THEIR 'coumadin clinic.' It was run by an imperious, know-it-all, pharmacist who 'specialized' in anticoagulation, didn't believe that it was possible that a mere mortal could POSSIBLY self-test and self-manage.

He made a prescription without even KNOWING why I was taking warfarin.

THIS is a SPECIALIST?

He refused to prescribe warfarin. Six months later, his 'clinic' called to see if I was taking warfarin. If they cared, why would they wait six months to contact me?

My new PCP trusts me and writes the prescriptions for my warfarin.

A decade + of self management convinced him that I have SOME idea of what I'm doing.

If you can find a doctor who trusts you to do your own self-testing, and self-management (if you're comfortable doing this), the doctor may trust you enough to prescribe your warfarin. This is probably better than battling the morons at your clinic, and probably saves your insurance that is no doubt being charged ridiculous amounts for tests you can do at home, and getting the clinic's erroneous advice.