Warfarin without Coumadin clnic

[pellicle]

LOL

..after all, I've been dealing with INR since most of them were in diapers.

perhaps before even conceived ...

 

[pellicle]

Funny thing is that they need to use these words on the label, so my 1, 3 & 5mg tablets all have this on them

"...directed by your... " is on the back of that label.

So finally (thanks to a nice and friendly Spanish descent Dr) I have my "dose" not written on the bottles.

FWIW its usually somewhere between 6 and 7mg daily

 

[dick0236]

FWIW its usually somewhere between 6 and 7mg daily

I stayed at 5mg for years. About a year ago I started losing weight and my docs wanted me to start drinking "BOOST" weight gain drink and my INR got kinda squirley. We figured it was the Vit K in the BOOST. Sure enough, we upped my dose to 6mg daily and my INR seems to have leveled off in the mid-threes. Proves again that "we dose the diet......we do not diet the dose.

 

[pellicle]

Hey

. Sure enough, we upped my dose to 6mg daily and my INR seems to have leveled off in the mid-threes

as you may recall, I was on antibiotics for 10 years after my post-surgical infection on my #3 surgery. That was 500mg 3 times daily for a very long 10 years. I can now tell you that my "rodeo ride" INR was caused by that not least because of the gut flora role in making K2. A typical year:

since going off antibiotics (a personal call, which I'm unsure if I'm going to pay for just yet) has revealed its more like this:

I'm sure you can see where in 2022 I ceased antibiotics.
The "variance" in my INR response has dropped from standard deviation = 1.02 to 0.32 (meaning much better)

My data provides good supporting evidence for this observation
https://pubmed.ncbi.nlm.nih.gov/7895417/
Since 2013 I've always tweaked dose as needed to maintain INR as the primary goal (which it is).

 

[Protimenow]

I've been self managing and self testing for about 14 years. I have a PCP who trusts me and prescribes my warfarin when I request it.

When Coumadin (the patented medication) was the only game in town - before generics became available - I was able to get it from a company based in India (I won't give the name here, in case the administrator has a problem with this).

I agree that it's irresponsible of the physician to refuse to provide prescriptions for warfarin - knowing the risks of NOT taking it. I suggest finding another doctor. It's my PCP who prescribes it for me - my cardiologist doesn't want to be bothered with it.

One more thing that I saw in another message - only getting 7.5 mg and 10 mg warfarin pills doesn't seem like a good idea - both doses may be too high, and there's not a lot of flexibility in dosing.

Personally, I get 4 mg, 5 mg, and 1 mg. From these three pills (which can be easily split in half), I can make practically any dose I need. I'm currently taking 5.5 mg - usually by taking a 5 mg and a half of a 1 mg pill. (I sometimes have 7.5 mg warfarin that provides 7.5 mg but can, if I want to get an unnecessarily accurate dose based on a half of a 7.5 (3.75) plus whole or half of a 1, 4, or 5.) I don't get 2 mg warfarin - the dosing I need can be made with the doses that I usually stock up on.

One more benefit - I usually get 90 of each dose - this gives me some breathing room if my doctor gets antsy about refills (he hasn't), or I have to change doctors. Because I don't use every pill every day, the supply lasts much longer.

 

[MarkZ]

It’s rare that I deviate outside my admittedly wide-ish range of 2.0-3.5 (range suggested by my previous cardiologist). So I steadily take 7.5 daily and watch it, and rarely have to adjust. So I typically only use 5 and 2.5 pills, but could split the 5’s if it came down to it. Fortunately I’ve never had the insurance company question the two different orders, but the docs also give me just enough pills to where I’m running out at my next refill. In the past this wasn’t a big problem because getting refills was never an issue until now. But now I wish I had accumulated extras at some point somehow.

My next steps are:
1) Call my previous Coumadin clinic on the other side of the country and hope they are willing to prescribe this one time while I set up a new Coumadin clinic.
2) Go to urgent care to see if they will prescribe
3) Go to the ER and see if they will prescribe
4) Email my cardiologist to her internal work email as a colleague rather than patient and pester her about a refill. This is not professional, but neither is withholding someone’s warfarin in an emergency.

 

[pellicle]

Hey

Go to the ER and see if they will prescribe

They should. That's what I did in Finland (got a script from the local hospital), got me by for a few months. Until I could get in with a local doctor.

 

[tom in MO]

It’s rare that I deviate outside my admittedly wide-ish range of 2.0-3.5 (range suggested by my previous cardiologist). So I steadily take 7.5 daily and watch it, and rarely have to adjust. So I typically only use 5 and 2.5 pills, but could split the 5’s if it came down to it. Fortunately I’ve never had the insurance company question the two different orders, but the docs also give me just enough pills to where I’m running out at my next refill. In the past this wasn’t a big problem because getting refills was never an issue until now. But now I wish I had accumulated extras at some point somehow.

My next steps are:
1) Call my previous Coumadin clinic on the other side of the country and hope they are willing to prescribe this one time while I set up a new Coumadin clinic.
2) Go to urgent care to see if they will prescribe
3) Go to the ER and see if they will prescribe
4) Email my cardiologist to her internal work email as a colleague rather than patient and pester her about a refill. This is not professional, but neither is withholding someone’s warfarin in an emergency.

You do have a fifth option...comply. You can still find an alternative later on. You gain nothing by begging for warfarin at the ER.

It's a fact of life that medical actions engender risk for medical personnel and cost for insurers whether it be a company or country insuring. When it comes to warfarin, insurance companies and some medical practitioners mitigate the risk associated with warfarin dosing and monitoring by requiring a coumadin clinic. That's a business and medical decision that usually has to be honored for a doctor to remain in a practice.

There are different scenarios for warfarin and risk. Some have reported on this forum that their country's health service doesn't allow home testing (for cost or risk wasn't stated) but only requires monthly clinic testing (which is higher medical risk, but lower cost.)

 

[Chuck C]

This of course is a false dilemma. “Either choose to engage or not” is not a viable choice when it comes to a medication that keeps me alive. It also fails to acknowledge that “declining” to work with HIS hospital’s coag clinic is not the only safe option. The hypocrisy that “safety” is at the root of his stance while he is denying me life sustaining medication is also notable.

This reminds me of a small incident that I had with my pharmacy. I keep 6mg and 1mg warfarin on hand. Over the past 18 months, my daily dosage has ranged from 6.5 to 7mg. So, this combo is ideal for me. I had plenty of 1mg, so I just asked my cardiologist to reload my 6mg, which he did. However, when I went to pick them up, the pharmacist informed me that there was a problem and they could not yet give them to me. They did not inform me what the issue was until I inquired. It turns out that having the 1mg and 6mg prescriptions in their system confused them- which is it 6mg or 1mg?

I explained that I self-test and need both the 6mg and 1mg to get the dosage right, usually taking about 6.5mg/day. It did not seem that she understood. She said she would need to check with my doctor, because warfarin "can be very dangerous if the dosage is wrong." I think most here will see the irony in that. No one is more aware than we are how important it is to get the dosage right, which is why we test often. So, I was turned away and told they would let me know when they got it sorted out.

Three weeks passed and I heard nothing from them. The irony is they they turned me away, to protect me from a dosage they felt could be harmful to me, yet denying a patient warfarin for 3 weeks could be fatal. Fortunately, I always refill when I have at least a 30-day supply left, so my situation was not urgent. Also, I have a bunch of 4mg on hand which I could have used to make 6mg if needed. I called them after 3 weeks to rattle their cage and they claimed to have never heard back from my cardiologist's office. So, I contacted him through the portal and asked him to reach out to them to straighten it out. He did. I had my prescription refilled the same day.

You never know when you are going to run into one of those individuals who can't proceed because they can't seem to get the round peg to fit into the square hole, so I always keep plenty of warfarin in reserve for such an event. I even keep a 30-day supply with me at all times in my car, or when I travel, just in case, you know, zombie apocalype or something.

 

[skier]

So I am in the process of establishing new care at a competing health system — not a good look when your own doctors and faculty choose to seek care elsewhere.

Consider establishing care with a concierge PCP with a fixed monthly fee and doesn't involve insurance. I will pursue that option if it looks like I won't hit my out-of-pocket max and I want to dump the overpriced at-home monitoring service.

 

[LondonAndy]

I find it interesting the different dose pills that are issued in different countries (a topic that has been discussed here some years ago). I am prescribed 1, 3 and 5mg pills, so that I can use them to make up most doses easily. Typically I take 6mg daily, +/- 1mg occasionally, when my self-testing says I need a tweak.

 

[dick0236]

I find it interesting the different dose pills that are issued in different countries (a topic that has been discussed here some years ago). I am prescribed 1, 3 and 5mg pills, so that I can use them to make up most doses easily. Typically I take 6mg daily, +/- 1mg occasionally, when my self-testing says I need a tweak.

If I were you I'd discontinue the 3mg tablets. You can accomplish the various dosing needs with the 1's and 5's. They can be split to cover a wide range of dosing needs........and will be one less chance of grabbing the wrong pill. Cheers

 

[MarkZ]

You do have a fifth option...comply. You can still find an alternative later on. You gain nothing by begging for warfarin at the ER.

It's a fact of life that medical actions engender risk for medical personnel and cost for insurers whether it be a company or country insuring. When it comes to warfarin, insurance companies and some medical practitioners mitigate the risk associated with warfarin dosing and monitoring by requiring a coumadin clinic. That's a business and medical decision that usually has to be honored for a doctor to remain in a practice.

There are different scenarios for warfarin and risk. Some have reported on this forum that their country's health service doesn't allow home testing (for cost or risk wasn't stated) but only requires monthly clinic testing (which is higher medical risk, but lower cost.)

I understand. The problem is one of vendor lock in essentially. The issue isn’t that the system is requiring that I use a Coumadin clinic (which I’ve been doing for two years). The issue is that they are requiring that I use THEIR Coumadin clinic. This is not unusual. But it’s also IMO a violation of the basic tenets of patients’ rights to seek medical care without establishing exclusive contracts for service. I would be equally upset if my cardiologist dumped me because I wouldn’t use her system’s PCP.

And I understand why they do it. It’s under the guise of control over protocol. But it’s also due to process being “difficult” and not interoperable in medicine. But there’s a little bit of (a lot of) profit motive at play too, unfortunately.

Anyway, the ship has apparently sailed when it comes to the Coumadin clinic at this system. They can’t see me for weeks.

 

[pellicle]

But there’s a little bit of (a lot of) profit motive at play too, unfortunately.

I usually say "follow the money" to find the source of a problem like this

 

[MarkZ]

Just an update - my prior PCP (who is no longer practicing family medicine and is in a different specialty now) agreed to extend my prescription for 90 days. I’m sure this didn’t align with “protocols” but the difference between a good doctor and a bad doctor is knowing when it is appropriate to deviate from protocol. I’ll get off my soapbox now.

 

[Chuck C]

I’m sure this didn’t align with “protocols” but the difference between a good doctor and a bad doctor is knowing when it is appropriate to deviate from protocol

That is definitely one of the things differentiating the good ones from the bad ones.

 

[Protimenow]

I keep a supply of 1, 4, and 5. I don't bother with 3 mg - I don't see much need for 3 mg (at least, not for my dosing). My usual doses run from 5 to 6.5 (and sometimes - rarely - to 7)mg. 5 mg is simple - just a 5 mg pill. 5.5 is simple - a 5 mg and 1/2 of a 1 mg. 6 is simple - a 5 plus one or a 4 plus half a 4. 6.5 is easy - a 4 and 1/2 of a 5, or 5 plus 2 plus 1/2 of a 1, or a five and 1 1/2 1s.

No 3s were harmed in the making of these doses.

One other comment about sourcing warfarin - not a recommendation - but years ago, I got my warfarin from a vendor who was in another country (I won't go any further into this source).

My PCP trusts me to manage my anticoagulation - I've been doing it since 2009. So far, I've gotten the prescriptions that I use to make up my current dose, but I try to keep a supply on hand just in case he dies or I have to go to another doctor for the prescription or, for some reason, suppliers hit some kind of a snag.

I may have been questioned once or twice by a pharmacist about the different doses I'm taking - once I explain the reason, all is well.
My wife takes a different medication - 20 mg in the mornings, 10 mg at night, and the pharmacist often points out that I'm getting two doses - I have to explain this more often than I have to explain about warfarin.

 

[dick0236]

I would like to respond as to maintaining a stock of various strength warfarin meds. I am writing this response to ease any concerns or fears of the new warfarin user.......or those who may be considering a mechanical valve and a lifetime of anti-coagulation monitoring. The following is MY experience with warfarin......yours may be different.

I've never found a need to keep multiple strengths of warfarin on hand.....maybe two, but not more than two. By "splitting" pills I can cover virtually any warfarin need.

Keeping several different warfarin MG's increases the possibility of dosing mistakes. Again, the ability to split pills will cover warfarin need. If you do use multiple strength tabs make sure you keep your "pill box" properly loaded.

Up until a year ago I was on 5mg daily for 10+ years with only a minimal need to alter my dose to 2,5, 5, 7.5 or 10 to cover INR variances. A year ago I began to drink a BOOST weight gain drink (contains vitamin K) and my INR became kinda "squirrely". I was prescribed a month's supply of 1mg warfarin to add to my regular 5mg dose. After a few weeks my INR settled down to my INR range of 2.5-3.5. I have now rewritten my warfarin Rx for 6mg. (one pill).

For those of you new to warfarin.....or considering warfarin therapy this is NOT rocket science.....nor do you need to be a chemist to successfully live with warfarin.

 

[Superman]

By the way, this was the PCP’s response to the cardiology nurse’s request to write me a prescription:

“I will not. I have had a couple of other patients initially decline to work with the anticoagulation program, but that is clearly our safest care option and our standard of care here. I will not short circuit that safe care option by prescribing warfarin on the side. The patient can either choose to engage with the anticoagulation clinic, or not. His choice. Thank you.”

This of course is a false dilemma. “Either choose to engage or not” is not a viable choice when it comes to a medication that keeps me alive. It also fails to acknowledge that “declining” to work with HIS hospital’s coag clinic is not the only safe option. The hypocrisy that “safety” is at the root of his stance while he is denying me life sustaining medication is also notable.

I get that he may choose not to continue care if I don’t follow his recommended protocol, and that’s fine. But denying treatment rather than softly transitioning my care to another provider is downright malpractice in my opinion.

I recall a refill challenge like that one time. My cardiologist felt I was due for a check up. I couldn’t fit it into my schedule prior to running out.

I left them a voicemail asking if they really felt it was appropriate to threaten my life over a scheduling challenge. I might have said, “You’re going to kill me because I can’t make it into the office before I run out of medication?” I got a call from the pharmacy that afternoon letting me know my refill was ready. Hasn’t happened again.