What is it like taking coumadin?

[torreypines]

Hi,
My healthy 44 year old husband needs to have an AVR within the month and we're considering the On-X valve (surgeon recommended it). We need to know what it's like on a day to day basis.

1. How often do you take coumadin?
2. How is your diet effected? Can you eat spinach and lettuce?
3. How often do you check your levels? Is taking coumadin similar to being a diabetic?
4. What are the physical side effects?
5. How long did it take you to determine appropriate levels?
6. On a scale of 1 to 10, how big of an impact does it have on your life?
7. Aside from bleeding, what are coumadin complications?

Many thanks in advance,
Christine

 

[Ross]

Hi Christine, I'll answer some of these if not all.

1. Take Coumadin daily
2. You eat like you always have and don't change a thing. Just don't binge on things. Consistency is the key or at least semi consistent. I eat lots of Brussel Sprouts, Spinich, Lettuce, Asparagus, heck everything.
3. Most people test once a month. Others such as myself, weekly, but only because Medicare pays for weekly testing.
4. Generally, there are no physical side effects.
5. It takes most people about a month to stabilize if they are managed properly.
6. On a scale from 1 being little and 10 being great, I'd say 2.
7. There are possible side effects, but they are rare in patients that are properly managed and compliant. I'll get you a list.

Possible side effects
NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine. If you notice any unusual effects, contact your doctor, nurse, or pharmacist. CONTACT YOUR DOCTOR IMMEDIATELY if you experience any back, side, muscle, joint, or stomach pain; black tarry or bloody stools; blood in the urine (pink or brown urine); bloody or coffee ground-like vomit; chest pain; decreased urination; dizziness; fainting; fever; numbness or tingling; pain, unusual color, or temperature change in any area of the body; pale skin; purple, dark, or painful toes; shortness of breath; skin sores or ulcers; stroke symptoms (such as confusion, slurred speech, vision problems, one-sided weakness); sudden severe pain in your legs, feet, or toes; trouble swallowing; unusual bruising or bleeding (such as nosebleed, unusual bleeding from gums, increased bleeding from cuts, increased menstrual or vaginal bleeding, coughing up blood); unexplained swelling; unusual pain, swelling, or discomfort; unusual headache or weakness; wounds or sores that do not heal properly; or yellowing of the skin or eyes. An allergic reaction to this medicine is unlikely, but seek immediate medical attention if it occurs. Symptoms of an allergic reaction include rash, itching, swelling, dizziness, or trouble breathing. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist. This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your healthcare provider. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

See also www.warfarinfo.com
http://warfarinfo.com/warfarinfo.com2.htm

Also, I posted a bunch of Pilot Medical Linkage in your other thread in valve selection. I think you'll find them helpful.

 

[TenPly]

Ross said it best. Really, as long as you test when you're supposed to, keep a steady diet (no major changes in what you eat -- like don't go on a spinach and broccoli binge for a day ) and stay up to date with your doctor, taking Coumadin is no sweat.

If you're physically active, then of course you'll want to exercise more caution, so as not to get hurt because with taking anticoagulants comes a higher tendency to bleed if you get injured. Myself, I'm pretty active (avid road cyclist), but never had any issues.

 

[dick0236]

Hi,


1. How often do you take coumadin?
2. How is your diet effected? Can you eat spinach and lettuce?
3. How often do you check your levels? Is taking coumadin similar to being a diabetic?
4. What are the physical side effects?
5. How long did it take you to determine appropriate levels?
6. On a scale of 1 to 10, how big of an impact does it have on your life?
7. Aside from bleeding, what are coumadin complications?


Christine

1. Daily
2. Very little. I eat whatever I enjoy, including a lot of vit K vegs. I only try not to splurge at any one sitting.
3. I self-test every two weeks. I don't think it is similar to diabetic testing, other than you do have to "pin prick" a finger.
4. I have not experience any physical side effects.
5. I can't remember. The appropriate level will change from time to time. I have gone from 10mg as a young man to 5mg as an old man.
6. Maybe 2 or 3
7. Bleeding and bruising have never been an issue. Yesterday I fell off a ladder and ripped an elbow open. It took 6 stitches, but with very little bleeding. I even have a very sore "butt" from hitting a concrete floor, but no bruising.
8. I'll add #8. It does require that you develop a routine of taking the pill as prescribed and test routinely. Warfarin is not a drug that you can "play fast and loose with". It can cause serious problems if you don't follow a common sense regimen.

 

[Freddie]

I've had stitches and a black eye with no problems. (you should have sen the other guy LOL)

But seriously, one thing to remember when taking warfarin is to take this medication at the same time every day.......well... within 1 hour of a regular set time. This will become a habit before you know it, but is important to remember.

 

[MarkU]

1. I take 5mg six days a week and 7.5mg one day a week.
2. No effect on my diet. Eat the same stuff I always have. Also drink
alcohol most every day, mostly red wine.
3. I get my INR checked every six weeks. You don't have to check as
often as a diabetic needs to.
4. No side effects.
5. Took about a month for my INR to stabilize post-op.
6. About a 2.
7. Bleeding has not been a problem for me, nor has bruising. Putting up with
dentists and gastrointernologists who don't understand how Coumadin
works has been the biggest challenge.

Mark

 

[Cris N]

The comments by the others are pretty similar to mine though it took me quite a long time to get stable. Regarding the effect on my life... very, very little. I still use sharp knives and scissors (though I still DON'T run with them), I use a non-electric razor. I did NOT buy the Coumadin cookbook though it looked like there are some good recipes in it. The worst that I've experienced are some nasty bruises - I count my blessings that my fancy valve keeps me alive to enjoy them! I do test once a week and I have a very cooperative doctor who writes the prescriptions I need without bugging me.

Warfarin really isn't a big deal for the vast majority of people. Just another pill that you need to take on a very regular basis.

 

[KAJ]

Christine,

I am pretty imuch in line with what other have stated. My PTINR is checked aboiut once every three weeks. As far as an impact scale, I would say about a 2.5 (minimal impact).

Karl

 

[Ross]

I did NOT buy the Coumadin cookbook though it looked like there are some good recipes in it.

Just wanted to say, Don't buy the Coumadin cookbook nor listen to Dr. Gourmet's coumadin diet garbage either. I do own the Coumadin Cookbook and yes, recipes are fine, but never ever ever try to regulate your Vit K intake. That is always the first thing a new person does when they start the drug. All you'll do is drive yourself insane and have your INR all over the place. Simply eat like you always have and it'll be adjusted for.

 

[sue943]

1 - Daily
2 - Eat what you want - steady don't binge
3 - My local hospital has a warfarin clinic and they normally test monthly unless there are changes in a patient's levels, then it is more frequent until stablised again. Initially it is a couple of times a week.
4 - I haven't had any
5 - About a month from surgery
6 - About a 2 I guess, very little impact. Just check that there are no interactions with drugs and preparations such as aromatherapy oils.
7 - I think that has been covered.

 

[gadoty1]

But seriously, one thing to remember when taking warfarin is to take this medication at the same time every day.......well... within 1 hour of a regular set time. This will become a habit before you know it, but is important to remember.

I don't take mine within an hour range every day. I take anytime after 5 o'clock. Whatever time I think about taking it is when I take it, but I have set an alarm on my phone for 8pm just in case I had forgot it. So far (it's only been a year) I haven't been really far out of range (my range is 2-3). I did forget to take it once and I was 1.6, which was the worst I've ever been out of range. It took about 2 weeks to get stable again. My range kinda swung up and down between 2-3 then finally settled around 2.3 which is where I normally am.

1. I take 6 mg once a day.
2. My diet isn't really affected at all. I normally eat broccoli or collard greens or salad about 2-3 times a week. I have been bad a couple times and ate a bigger than normal serving of collards or broccoli, like i'm sure many others on here have done. I didn't have any problem with my INR but I probably didn't check it until a few days later so it would have went back to normal by then anyways.
3.I check every 2-3 weeks noramlly. I don't think it's like being a diabetic. I think it's more predictable as long as you keep things in a routine. ie. take your coumadin daily and not binging on vit k veggies all of a sudden.
4. I seem to get cold a little easier. especially my toes. I also notice that when I do scrape myself on something it seems like it gets a little more tender than it use to. I think my skin is more sensitive than before too. None of this is bothersome or extreme.
5.I think it initially took about a month or so to get the dosage right but I have had to up my dosage a few times over the past year my very small amounts.
5. 1-2 I don't really think about it except to take my daily med.
6. Ross had the best answer for this one.

Sorry I talk so much but I am trying to be as descriptive as possible.

 

[gadoty1]

By no means am I an expert on the coumadin subject, those were just my personal experiences with it thus far. Others on this Forum have much more experience with it for sure.

 

[olefin]

1. Daily, have never missed a dose, thanks to my wife.
2. Doesn't effect my diet, I eat what I want and adjust for my eating.
3. Since Feb this year I home test weekly and adjust dosage as needed. Before, I was tested monthly at my cardiologist office, he sent the sample to a lab.
4. No physical side effects.
5. Don't remember, it's been 18 years ago. I know it was no big deal or I would remember. I already was familiar with coumadin for wife had taken it.
6. Not over 2.
7. Coumadin complications have been covered.

 

[Ross]

But seriously, one thing to remember when taking warfarin is to take this medication at the same time every day.......well... within 1 hour of a regular set time. This will become a habit before you know it, but is important to remember.

Hon, Coumadin is so slow acting that if you forget it, you can still take it up to 8 hours late (I've taken it 12 hours late!) and not have to worry. Remember, it takes 3 days for that dose to show up in a test, so taking it precisely on time isn't that important except for establishing a habit.

 

[netmiff]

I have rambled on a bit, but I just want to say I wouldn't change my valve for anything, within reason, although I obviously wish I could have kept the one I was born with lol and not had to go through the surgery and everything else. It s a big thing to get your head around at first, but after 2 years, everything is just normal and routine for me, much like it was before surgery.

1. How often do you take coumadin? daily
2. How is your diet effected? Can you eat spinach and lettuce? I'd die if I couldn't!
3. How often do you check your levels? Is taking coumadin similar to being a diabetic?
4. What are the physical side effects? none that I know of, but you do have to watch for interactions with other meds, even herbal and OTC ones, eg use tylenol, not ibuprofin.
5. How long did it take you to determine appropriate levels? immediately after surgery, your food intake, metabolism and the amount of exercise change greatly in the first 3 months or so. coumadin levels are affected by all three, so it can change. I haven't had a major change in dose in about 18 months (been on it just over 2 years).
6. On a scale of 1 to 10, how big of an impact does it have on your life?
Personally - about a 0000.0005
7. Aside from bleeding, what are coumadin complications?
remembering to take the pill every night is the worst I can think of! but I now have one of those divided medication boxes and a routine, and that really helps.

There are a couple of other things that go along with a mechanical valve:

1. Be careful with MRIs, the valve should have a card with the amount of MRI"stuff" (magnetism) that it can handle;
2. If any surgery is planned, coumadin needs to be stopped at least 3 days before, and "bridging" the anti-coagulation coverage with some form of heparin is required.
3. Before surgeries and even some dental work, antibiotic pre-meds are required.

Now, thoughts and procedures on all the above vary from doctor to doctor, so check with surgeon and/or cardiologist and see what they say.

 

[torreypines]

Thanks everyone for sharing your stories. You've given us a lot to think about. Admittedly, our knowledge of coumadin was limited before this past week. You've helped fill in the gaps and educate us with your first person accounts.

Best wishes,
Kurt and Christine

 

[Ross]

Thanks everyone for sharing your stories. You've given us a lot to think about. Admittedly, our knowledge of coumadin was limited before this past week. You've helped fill in the gaps and educate us with your first person accounts.

Best wishes,
Kurt and Christine

Makes a world of difference to talk to those that take it vs listening to those that don't. People are told so much B.S. about it, that it's a no wonder their terrified of the drug for the most part. The Myths and nonsense are circulating today just as they have since the beginning.

 

[gadoty1]

I was soooo scared of coumadin before I was actually on it. I was pleasantly surprised when I didn't Feel any different from it. Nothing like I had expected.

 

[catwoman]

For the enlightenment of others not already taking warfarin:

1. How often do you take coumadin? Daily, at breakfast.
2. How is your diet effected? Can you eat spinach and lettuce? Diet is not affected one iota. I eat as I did pre-op. I've always enjoyed salads, green stuff & other items notorious for having large amounts of vitamin K.
3. How often do you check your levels? Is taking coumadin similar to being a diabetic? Usually once a week. Am stretching tests further apart because I've been so stable. Last two tests were 5 weeks apart, both in range. I home-test.
4. What are the physical side effects? At nearly 6.5 years after starting warfarin, I'd say none, other than the anticoagulation effects.
5. How long did it take you to determine appropriate levels? About 3-4 months as I moved toward my normal activities.I would have an INR in range and then the next one was slightly out of range, but it was about 3-4 months before I was stable.
6. On a scale of 1 to 10, how big of an impact does it have on your life? 1. I take Band-Aids with me when I travel, since most of my travel is centered around activities with cats. Never know when a cat will suddenly jump out of your arms and a nail grazes your arm.
7. Aside from bleeding, what are coumadin complications? Some Rxes and OTCs increasing/decreasing how well warfarin works, none. And you will need to deal with anticoagulation issues for some medical or surgical procedures. But I decided to cross those bridges when they present themselves, not to worry about things that may or may not occur.

 

[dick0236]

I was soooo scared of coumadin before I was actually on it. I was pleasantly surprised when I didn't Feel any different from it. Nothing like I had expected.

From the time I joined this Forum, I have read so many posts where folks are terrified of the drug Coumadin/Warfarin. I have taken this drug longer than most, 42+ years, and most of the fear is unjustified. The misinformation traces back a few decades when doctors(they have told me so) and patients did not understand the drug. The drugs only job is to minimize the risk of blood clots and it does that job well. As long as I take my pill daily and test routinely, I have had few, if any, problems.

My only problem came 35 years ago when I played "Russian roulette" with the drug (went without it while on vacation) and suffered a life altering stroke. I have not been that stupid since and have had NO further problems.

In my opinion, and in my case, the problems with warfarin are mostly caused by misuse and ignorance of the drug by the patient. Warfarin is a very predictable drug. Take it as prescribed, test routinely, and stay within a reasonable INR range and you will have few problems. Play "fast and loose" with it and it will bite you....been there, done that....WILL NOT DO THAT AGAIN.

Long term success with warfarin only requires a simple regimen and common sense.