I keep 5 and 1 mgs on hand as well. You can get them in 60 count refills as well. I had to ask for the 60ct refills, but it's the same charge as the 30ct.
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I keep 5 and 1 mgs on hand as well. You can get them in 60 count refills as well. I had to ask for the 60ct refills, but it's the same charge as the 30ct.
JaneF
Active member
Hello all,
It would be impossible to quote everyone that has weighed in on my question about INR and warfarin, but I appreciate it so much. This forum has been such a valuable resource since my MVR to simply see if some of the things I’m experiencing are “normal” and what to expect for my new normal I guess.
You are correct Superman, I currently have 4 mg tablets, which is what I left the hospital with and when adjustments are made it is always in increments of 4 mg.
I live in a very small rural town and my cardiologist and the coumadin clinic is over an hour away, so he put my general MD in charge of monitoring my INR levels. I work 20 minutes from town and had to leave work, drive 20 minutes to get my finger pricked (5 min) and drive another 20 minutes back to work. My MD insisted my warfarin be taken at 6:30 pm each evening and I be tested between 8:00 - 10:00 am. This was very inconvenient because I could not test before work, because I work in a different time zone than I live and must be at work at 8:00 am ET, which is 7:00 am CT in my town - I know, very confusing, but I have worked and lived in a different time zone for 15 years and you get used to it!
I did not know self-testing was an option until I found this forum and all of you! I researched and made numerous calls and my cardiologist was willing, but MD was not because off the 3rd party involved (CoaguChek). He wanted me to just call & report my number and skip the middle person and I would too, if I could have gotten a meter and supplies - next to impossible!
I finally start self-testing Dec. 2018 -FREEDOM- no more mad dash to the lab, getting scolded for not testing on the exact day because I had meetings scheduled (like I have nothing better to do), etc. Now I can sit at my desk and test in 5 minutes and send the results via WiFi on my cell phone.
BUT the MD made a huge deal about taking warfarin exactly as instructed. I have not varied, but I was warned if I did he would no longer monitor it. Then what would I do? MD is the one that has set the “splurge” days that Andy pointed out. I don’t think my cardiologist exactly agrees, because once he shook his head about it and said “why does he do that”, but he doesn’t change anything, because he has turned all my meds over to him, plus I only see the cardiologist once per year now.
Pellicle mentioned my medications could be a factor; this is what I take now, besides Warfarin, Benazapril, Metoprolol, Topamax and several vitamins and such that I continue to be low in - Vit D, Potassium, Selenium (because of Topamax). I was on all of these prior to OHS except Benazapril, it has recently replaced Losarten, because of the recall.
Several months after OHS I went on Celexa, as I had really let surgery affect me and being 48 years old no one in my social circle had ever had OHS. I didn’t have anyone that truly understood the anxiety and shock (my stay in the waiting room was very brief). My family, friends and coworkers were wonderful, but they simply didn’t understand. Anyone else feeling this way - a little depressed with some anxiety thrown in for good measure?
Wow, I really rambled on, all of that came pouring out when I meant to answer a few questions about INR, warfarin and other medications! I think the writing of part of my story was very therapeutic, so sorry you all got the very long answer to your questions and observations! There are people that DO understand now!!!
It would be impossible to quote everyone that has weighed in on my question about INR and warfarin, but I appreciate it so much. This forum has been such a valuable resource since my MVR to simply see if some of the things I’m experiencing are “normal” and what to expect for my new normal I guess.
You are correct Superman, I currently have 4 mg tablets, which is what I left the hospital with and when adjustments are made it is always in increments of 4 mg.
I live in a very small rural town and my cardiologist and the coumadin clinic is over an hour away, so he put my general MD in charge of monitoring my INR levels. I work 20 minutes from town and had to leave work, drive 20 minutes to get my finger pricked (5 min) and drive another 20 minutes back to work. My MD insisted my warfarin be taken at 6:30 pm each evening and I be tested between 8:00 - 10:00 am. This was very inconvenient because I could not test before work, because I work in a different time zone than I live and must be at work at 8:00 am ET, which is 7:00 am CT in my town - I know, very confusing, but I have worked and lived in a different time zone for 15 years and you get used to it!
I did not know self-testing was an option until I found this forum and all of you! I researched and made numerous calls and my cardiologist was willing, but MD was not because off the 3rd party involved (CoaguChek). He wanted me to just call & report my number and skip the middle person and I would too, if I could have gotten a meter and supplies - next to impossible!
I finally start self-testing Dec. 2018 -FREEDOM- no more mad dash to the lab, getting scolded for not testing on the exact day because I had meetings scheduled (like I have nothing better to do), etc. Now I can sit at my desk and test in 5 minutes and send the results via WiFi on my cell phone.
BUT the MD made a huge deal about taking warfarin exactly as instructed. I have not varied, but I was warned if I did he would no longer monitor it. Then what would I do? MD is the one that has set the “splurge” days that Andy pointed out. I don’t think my cardiologist exactly agrees, because once he shook his head about it and said “why does he do that”, but he doesn’t change anything, because he has turned all my meds over to him, plus I only see the cardiologist once per year now.
Pellicle mentioned my medications could be a factor; this is what I take now, besides Warfarin, Benazapril, Metoprolol, Topamax and several vitamins and such that I continue to be low in - Vit D, Potassium, Selenium (because of Topamax). I was on all of these prior to OHS except Benazapril, it has recently replaced Losarten, because of the recall.
Several months after OHS I went on Celexa, as I had really let surgery affect me and being 48 years old no one in my social circle had ever had OHS. I didn’t have anyone that truly understood the anxiety and shock (my stay in the waiting room was very brief). My family, friends and coworkers were wonderful, but they simply didn’t understand. Anyone else feeling this way - a little depressed with some anxiety thrown in for good measure?
Wow, I really rambled on, all of that came pouring out when I meant to answer a few questions about INR, warfarin and other medications! I think the writing of part of my story was very therapeutic, so sorry you all got the very long answer to your questions and observations! There are people that DO understand now!!!
It is good to understand the bigger picture, Jane - no problem with the ramble! But now there's just the question: what are you going to do about it? It seems to me you need to discuss this with your MD and perhaps gently explain you have discussed your INR levels with a group of fellow heart valve patients who have pretty much unanimously said your dose of Warfarin needs to be more even and that you need to be prescribed several different size tablets so that you can take different amounts to what your current single size offering allows, and make smaller adjustments. This is critical to your health - going out of your therapeutic range for any reasonable time leaves you at much greater risk of thrombosis or stroke, and the current crude ways of managing your dosing are harmful to you.
I assume that you have to have a prescription to get the Coumadin/Warfarin? I am tempted to say that if he is difficult about being challenged, you can find a way to persuade him to prescribe the different size options then you could manage your dose yourself (it is not difficult and people here can help if needed) and manage your dose anyway.
I assume that you have to have a prescription to get the Coumadin/Warfarin? I am tempted to say that if he is difficult about being challenged, you can find a way to persuade him to prescribe the different size options then you could manage your dose yourself (it is not difficult and people here can help if needed) and manage your dose anyway.
Superman
Well-known member
Good grief. What is the obsession with evening dosing for Warfarin? I think for years it was viewed as something only retirees would take.
Jane, I’m 46 years old. I’ve been taking Warfarin since I was 17. Very early on, I decided my evenings were very unpredictable so morning was my best time. I take it first thing right after my shower. Test days, I test before I take it. With five kids and two jobs, I couldn’t predict where I’ll be from one 6:30 to the next. When I was in college, no way!
If the clinic says to adjust, they still say, “For this evenings dose....”. I just say, okay, and change the next morning.
If you’re home testing, you should be able to turn it back over to your cardiologist and handle via phone and email. Your MD is clearly outside of their comfort zone and attempting to manage by the book and seemingly afraid to change your prescription.
I email my test results in. They call if I’m out of range. They respond via email confirming receipt if I’m in range and I continue the same dose. I’m very comfortable pushing back if I disagree with their recommendations. We hash it out and come to an agreement.
If you bring this up to your Dr and he questions the soundness of the management style, my last few weeks have shown 2.4, 2.5, 2.4, 2.6, 2.5, 2.6.
Jane, I’m 46 years old. I’ve been taking Warfarin since I was 17. Very early on, I decided my evenings were very unpredictable so morning was my best time. I take it first thing right after my shower. Test days, I test before I take it. With five kids and two jobs, I couldn’t predict where I’ll be from one 6:30 to the next. When I was in college, no way!
If the clinic says to adjust, they still say, “For this evenings dose....”. I just say, okay, and change the next morning.
If you’re home testing, you should be able to turn it back over to your cardiologist and handle via phone and email. Your MD is clearly outside of their comfort zone and attempting to manage by the book and seemingly afraid to change your prescription.
I email my test results in. They call if I’m out of range. They respond via email confirming receipt if I’m in range and I continue the same dose. I’m very comfortable pushing back if I disagree with their recommendations. We hash it out and come to an agreement.
If you bring this up to your Dr and he questions the soundness of the management style, my last few weeks have shown 2.4, 2.5, 2.4, 2.6, 2.5, 2.6.
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JaneF
Active member
I do have to have a prescription for the warfarin Andy. To say that my MD is sometimes difficult is putting it lightly. I have seriously considered switching, however I have gone to him for close to 25 years and even though he can be cantankerous as he has aged I just haven’t gotten up the courage to find a new doctor and in my little town they aren’t that plentiful.
In early 2014 I complained of a racing heart and my pulse was staying consistently over 120, so he put me Metoprolol. I told him I was short of breath and he told me I needed to excercise more, but gave me an inhaler for excersise induced asthma. Then I told him I was retaining fluid, because my shoes were fine one day and too tight the next and he told me I just needed bigger shoes. I was so angry I could see red, but didn’t argue, because I could tell it was useless.
Fast forward to early December 2016 and by this time I was having severe problems walking from the parking lot into my office. I was extremely short of breath, lightheaded & dizzy. Christmas Day, December 25th, I was convinced I was having a heart attack, but did not want to go to the ER and risk being told it was only anxiety or gastrointestinal as is so common, plus the grandchildren were here and I didn’t want to upset them by thinking their Mimi was sick. I decided if I lived until Monday I would go to see the MD. I lived, thank goodness!.
MD did an EKG, but no blood work, and said no heart attack, but it might have been a cardiac event. I insisted on seeing a cardiologist this time, so they made an a appointment for one month out in February in the town over an hour away. I left the office still symptomatic and went to work where co-workers keeping trying to call an ambulance for me. My new cardiologist could not see me any faster, so I finally agreed to the ER in his town. No heart attack, but they admitted me for further testing and found my leaky valve. Surgeon said I had Rheumatic Fever as a child, who knew!?!
When MD got a copy of the Echocardiogram he did not agree and said it must be wrong, because if it was that severe he should be able to hear it and he could hear nothing! He had the audacity to call the cardiologist and say that! The cardiologist told him it was going toward the back of the heart and he could not hear it either, but that didn’t mean it wasn’t there.
MD has to be in the right mood and receptive in order to approach new things. I have become friends with the staff over the years and now ask them when I want to have a serious conversation about something new or a change. So bringing up the warfarin dosage, I will have to tread carefully and watch for the correct time.
If things don’t go well, it may well be time to change MDs as my family was furious when I went back to him after OHS. I will say he has been somewhat nicer and easier to deal with though.
In early 2014 I complained of a racing heart and my pulse was staying consistently over 120, so he put me Metoprolol. I told him I was short of breath and he told me I needed to excercise more, but gave me an inhaler for excersise induced asthma. Then I told him I was retaining fluid, because my shoes were fine one day and too tight the next and he told me I just needed bigger shoes. I was so angry I could see red, but didn’t argue, because I could tell it was useless.
Fast forward to early December 2016 and by this time I was having severe problems walking from the parking lot into my office. I was extremely short of breath, lightheaded & dizzy. Christmas Day, December 25th, I was convinced I was having a heart attack, but did not want to go to the ER and risk being told it was only anxiety or gastrointestinal as is so common, plus the grandchildren were here and I didn’t want to upset them by thinking their Mimi was sick. I decided if I lived until Monday I would go to see the MD. I lived, thank goodness!
. MD did an EKG, but no blood work, and said no heart attack, but it might have been a cardiac event. I insisted on seeing a cardiologist this time, so they made an a appointment for one month out in February in the town over an hour away. I left the office still symptomatic and went to work where co-workers keeping trying to call an ambulance for me. My new cardiologist could not see me any faster, so I finally agreed to the ER in his town. No heart attack, but they admitted me for further testing and found my leaky valve. Surgeon said I had Rheumatic Fever as a child, who knew!?!
When MD got a copy of the Echocardiogram he did not agree and said it must be wrong, because if it was that severe he should be able to hear it and he could hear nothing! He had the audacity to call the cardiologist and say that! The cardiologist told him it was going toward the back of the heart and he could not hear it either, but that didn’t mean it wasn’t there.
MD has to be in the right mood and receptive in order to approach new things. I have become friends with the staff over the years and now ask them when I want to have a serious conversation about something new or a change. So bringing up the warfarin dosage, I will have to tread carefully and watch for the correct time.
If things don’t go well, it may well be time to change MDs as my family was furious when I went back to him after OHS. I will say he has been somewhat nicer and easier to deal with though.
Superman
Well-known member
You NEED to fire that guy. He’s willing to kill you just to win an argument. And you’re loyal because?
Hi Jane! I totally agree that you need a new doctor!
I also agree that your dosing is too extreme at 8mg and 12mg, it should really be 9mg a day. When I first got out of the hospital I was taking 5mg and so had 5mg tablets only. When the INR managers at my cardiologist's office wanted to up my dose in the beginning they told me to change two days a week to 7.5mg, this had to be simply because I had 5mg tablets. I have only one word for this... lazy. Long story short I now self-adjust my dose which has fluctuated from 4.5mg per day to 6.5mg per day. I have a prescription for 1mg and 4mg tablets so I can make any combination I need.
And I also want to know why do they want evening dosing, it seems to me that trying to to take your warfarin in the evening is setting yourself up for failure in that you will eventually forget one night. I take mine in the morning as part of my morning routine.
Sue
I also agree that your dosing is too extreme at 8mg and 12mg, it should really be 9mg a day. When I first got out of the hospital I was taking 5mg and so had 5mg tablets only. When the INR managers at my cardiologist's office wanted to up my dose in the beginning they told me to change two days a week to 7.5mg, this had to be simply because I had 5mg tablets. I have only one word for this... lazy. Long story short I now self-adjust my dose which has fluctuated from 4.5mg per day to 6.5mg per day. I have a prescription for 1mg and 4mg tablets so I can make any combination I need.
And I also want to know why do they want evening dosing, it seems to me that trying to to take your warfarin in the evening is setting yourself up for failure in that you will eventually forget one night. I take mine in the morning as part of my morning routine.
Sue
JaneF
Active member
Superman you bring up some excellent points! One of the nurses at the MD office said most warfarin patients didn’t have to worry about rushing to and from work for testing, when I was making my case for self-testing, simply because they were older and retired.
The way MD explained the 6:30 pm dosage and the 8:00 - 10:00 am testing time to me was that those were the peak windows of time to take the warfarin and for the level in your system. Before I began self-testing I asked if I could take the warfarin in the morning at 6:30 am and test between 8:00 - 10:00 pm, but he didn’t agree because he would not be in the office at that time of night and apparently, in his mind, waiting until morning was unacceptable.
To your point about taking your medication in the evening Superman, I have 4 grandsons and there are baseball and soccer games, dinner with family and friends, working late, etc. so I simply set an alarm on my phone to remind me. Everyone that I’m with on a regular basis knows what it means, even the grandchildren, and they all say “take your medicine!”.
I honestly hadn’t thought about having my results sent to the coumadin clinic that my cardiologist uses, but now that I self-test I could actually do that and it’s a fantastic idea! Thank you!!
MD is doing these huge adjustments like skipping doses for one or two days and then redoing the whole regimen and it’s made me uncomfortable for quite a while, but I’m no doctor. That’s why I put all this out here on the forum and all the replies tell me I should be uncomfortable.....very uncomfortable.
Thank you everyone, please keep your thoughts coming!
The way MD explained the 6:30 pm dosage and the 8:00 - 10:00 am testing time to me was that those were the peak windows of time to take the warfarin and for the level in your system. Before I began self-testing I asked if I could take the warfarin in the morning at 6:30 am and test between 8:00 - 10:00 pm, but he didn’t agree because he would not be in the office at that time of night and apparently, in his mind, waiting until morning was unacceptable.
To your point about taking your medication in the evening Superman, I have 4 grandsons and there are baseball and soccer games, dinner with family and friends, working late, etc. so I simply set an alarm on my phone to remind me. Everyone that I’m with on a regular basis knows what it means, even the grandchildren, and they all say “take your medicine!”.
I honestly hadn’t thought about having my results sent to the coumadin clinic that my cardiologist uses, but now that I self-test I could actually do that and it’s a fantastic idea! Thank you!!
MD is doing these huge adjustments like skipping doses for one or two days and then redoing the whole regimen and it’s made me uncomfortable for quite a while, but I’m no doctor. That’s why I put all this out here on the forum and all the replies tell me I should be uncomfortable.....very uncomfortable.
Thank you everyone, please keep your thoughts coming!
Superman
Well-known member
Skipping two days? This dude seriously needs to be nowhere near anyone trying to manage Warfarin!
JaneF
Active member
Superman you, Andy, Dick & Sue really made me think about my loyalty to MD and I said he had been my doctor for a about 25 years - that’s half my life! I think that’s where my loyalty is coming from though - He’s been my doctor for half my life and that’s a long time!
My anger was so blinding right before and after OHS that I didn’t want to do anything rash, so I did nothing. I was completely furious with him though and wanted to ask him if he still thought it wasn’t my heart.
I tucked my crazy sarcasm back out of sight and tried to acted like a gracious southern lady.
Going back to 25 years, maybe that’s the whole problem. Maybe I have simple been his patient too long.
My anger was so blinding right before and after OHS that I didn’t want to do anything rash, so I did nothing. I was completely furious with him though and wanted to ask him if he still thought it wasn’t my heart.
I tucked my crazy sarcasm back out of sight and tried to acted like a gracious southern lady.
Going back to 25 years, maybe that’s the whole problem. Maybe I have simple been his patient too long.
I agree, the Coumadin clinic and doctor are obsessed with evening doses and I said fine for now, but need to transition to morning as I too am far more consistent and predictable in mornings. Their claim is you test in morning so you can adjust dose in evening. These people are used to dealing with morons so I can test before I dose in the AM and I plan on controlling my dose more than they will. Looking for a new cardiologist now that will collaborate with me understanding I know what the heck I am doing and not their typical patient.
Dodger Fan
Well-known member
My last cardiologist said that warfarin blocks vitamin k clotting factors and that aspirin makes the blood cells "slippery".
I have heard aspirin makes the blood platelets less sticky or slippery as you say. I believe vitamin K interferes with how warfarin is acting as it is metabolized in the liver, I believe vitamin k increases your bodies ability to coagulate / clot blood which is the opposite of what warfarin is doing. I believe I read that if you are way over on your INR they give your a vitamin k shot as that acts fairly quickly. But I could have misunderstood what I was told as I have been overwhelmed with info last few weeks and still trying to sort fast from misinformation.
D1GGY
Member
This is true anytime my INR has been out of whack I had to go to emergency for a drink of vitamin K.. Only happened twice due to eating habits..went to Thailand for three weeks checked INR before going was 3.0 which was great and got checked day I got home it was 7.2. Yikes. I also took aspirin for first year after survey then it stopped and just take warfarin..my dosage is 12 my a day.. Most people say that's lots but it's been the only dosage I can keep levels stable.
pellicle
Professional Dingbat, Guru and Merkintologist
I am not sure how you can target eating habits when you've made a lifestyle change and probably a temperature change too.
I find that when I travel internationally (and stay for some time) that my INR fluctuates.
Rather than attempt any nebulous theory on "WHY" I just test and alter dose administration.
If you feel jetlag (for instance) how can you be sure its not also effecting other parts of your metabolism.
Diet is the low hanging fruit to blame.
I took an 80 mg baby aspirin for a couple of years after my mechanical mitral valve replacement in 2005. Right up until I developed a bleeding ulcer. I can no longer take any NSAIDs.
pellicle
Professional Dingbat, Guru and Merkintologist
Bugger. I hope that's getting managed well now.
Aspirin and coumandin do not mix well. Your doctor should have told you that.
Evening dosage is recommended because it prevents an episode to happen during the night when one is sleeping.
Odd my surgeon has me on both and cardiologist was fine with it. I believe it is an accepted practice as long as you don;t have high risk bleed risks as it makes the platelets less sticky.
