Don't want to take Coumadin for life

[Joseph John]

From Newbie
Want help on reducing or eliminating Coumadin, Presently taking 10Mg daily for an INR of about 2.5. Any comments or experiences would be appreciated
Had an ATS aortic valve replacement in late 200 & no problems since.Just do not want to take Coumadin for the rest of my life
Thanks in anticipation

 

[sue943]

From Newbie
Want help on reducing or eliminating Coumadin, Presently taking 10Mg daily for an INR of about 2.5. Any comments or experiences would be appreciated
Had an ATS aortic valve replacement in late 200 & no problems since.Just do not want to take Coumadin for the rest of my life
Thanks in anticipation

As I see it you have two choices here, either have the ATS replaced with a tissue valve (although that will not guarantee you won't have to take warfarin) or stop taking warfarin and have a stroke - your choice!

If you have a mechanical valve you must take warfarin for life.

 

[Ross]

You have no choice other then to have the valve replaced with a tissue valve and then there aren't any guarantees that you won't still end up on it.

May I ask what has you so spooked about it? Something tells me that you've been told a bunch of rubbish and are following it.

 

[Karlynn]

Please go to the Stickies in this forum (anticoagulation) and read them.

The amount of coumadin you take does not correlate to risk. You take 10/day because that is what your metabolism requires to keep your INR in range. Your risk is no great than someone who takes 3/day to keep in range. We have people here who have been on Coumadin for over 40 years and they suffer no health issues due to it.

Tell us your fears or problems so that we know where this is coming from.

 

[jax]

Since you have a mechanical valve coumadin is your only option. My uncle has been on for 18 years and except for the occasional blood draw he has lived his life the way he wants to. I have been on it for 3 months after having a mechanical valve put in. Although I am still testing frequently. Taking Coumadin really isn't a big deal. I'd rather take it than end up not taking it and having a stroke or dead. And I am only 35. It only changes your lifestyle if you do everything they say not to do.

 

[ALCapshaw2]

Sue beat me to my first thought for an opening line.

As I see it you have two choices.

Take Coumadin and live for a Long Time.

STOP Coumadin and wait for a Stroke or Death.

Your Choice.

That said, what is your basic objection to Coumadin?

We have members who have been taking it for DECADES and are doing just fine. Examples include RCB 40+ years, Dick... almost as many, Gina > 20.

Have you read the "Stickys" at the top of the Listing for the Anti-Coagulation Forum? If not, do so. Also read Al Lodwick's very informative website www.warfarinfo.com

OR get your mechanical valve replaced with a Tissue Valve,(OHS#2) and be prepared to have another replacement (OHS#3) when that one wears out (most likely in less than 20 years...some in much less)

Again, it's your call.

 

[olefin]

Don't understand your big deal about coumadin?
Clue us in, there is a whole mess of us on this forum that don't make it into a problem.

How long you been taking it?

 

[geebee]

Welcome Joseph, sorry you are having problems.

Just like no one wants to have valve replacement surgery, no one really wants to take coumadin either. I would love to stop taking all my meds. However, I went through 3 OHS to stay alive. If taking coumadin keeps me alive and, in my case anyway, has not negatively affected my life one little bit, I am happy to take it. Next fall I will have been on coumadin for 30 years.

Like the others, I would ask what is your objection to the coumadin?

 

[CThrock]

First of all welcome to the fourm. You'll find alot of information here that will help you feel more at ease with your condition. I read your profile and that coumadin is the only med you take daily correct? Alot of us take up to 4 to 10 different meds a day. So, you can count that a blessing right there. I too would like to know why you are so spooked about taking coumadin daily. When thats the only med you take. I would give anything to be only taking one med daily. Coumadin saves your life, that's a little price to pay for taking a little pill once a day. I would'nt want to go through OHS again kust to stop taking one pill a day. Would you? BTW I've been on coumadin for over three years and never had a problem.

 

[Lisa in Katy]

You could do what my brother has done. He had an aortic valve replacement about 16 years ago. He hasn't taken Coumadin for a number of years. He's had 4 strokes - 3 small and one not so small. Apparently he has a death wish and is waiting for "the big one". Personally, I think it's inexcusable for him to put his family through that and knowing that most strokes don't kill you, just cause you major debilitation, potentially putting his wife and children through having to change his diapers and wipe his drool for life.

My advice is to keep taking Coumadin and hope for something different in the future. It shouldn't be that big a deal - a pill a day and a blood test a month for me. Certainly not as bad as insulin, chemo, and a host of other medical treatments.

 

[njean]

Unfortunately my friend, you have no choice w/a prosthetic valve! Either you take it or risk getting a clot & dying & what a shame that would be after having made it thru OHS & on your way to a better life!

I have been on coumadin for 30+ years & it's never been a big deal. I know that if I want to continue living (and who doesn't?), I must take my little pill every day without fail.

Count your blessings & appreciate the 2nd chance you were given!

Best wishes!

 

[terodac]

I know plenty of people with animal valves that have to take coumadin, it is like any other med just another step we have to do. I have been on a lot worst meds than our little rat poision. Not that bad when you have your own machine and can test yourself and adjust yourself. Bruising for me is my main complaint but I did that before coumandin.

 

[Jkm7]

Somehow I think OP is well aware of the risks of not taking coumadin in his circumstance.

I am very interested to read why it is so upsetting to him. I hope he comes back and explains.

He had a reason for making that post.... what is it?

 

[dtread]

Here's an interesting article about a guy that went without coumadin for about 30 years. With not one but two old ball and cage valves, both of which were noted for relatively high thromboembolic rates, and problems with strut fractures, and were eventually withdrawn from the market. The article says he took a lot of aspirin (four to twelve 325 mg tablets daily): http://icvts.ctsnetjournals.org/cgi/content/full/icvts;7/6/1167


http://www.youtube.com/watch?v=V55FfDnkQ6o

 

[sue943]

I just want to add that I have had a stroke, nothing to do with my mechanical valves, it was vegetation from endocarditis breaking off and hitting my brain.

Having had one stroke there is no way I want another, I will willingly take warfarin to prevent it.

 

[tobagotwo]

There are other compounds in the pipeline for ACT. Products that won't require dosage adjustments and constant testing. Because of the way the FDA works (and you do want it to work this way), the testing is long and is done in stages. I'd say the first of these drugs, if it continues to test well, could be available for ACT in five to eight years. It will be approved for use by people with AFib first (again, assuming that testing continues to be successful).

So hang in there and continue with the warfarin. No point in having a stroke now, when we're this close.

Best wishes,

 

[Eva]

Joseph, throughout all of our life we have to make choices, and there are consequences for each choice we make...some are good and some are bad. Stopping the coumadin will definitely result with bad consequences which you do not wish on yourself nor on anyone else. Count your blessings that all has been well since 2000...there are many OHS patients who develop complications and wish their surgery went well! We all wish we do not need to take medications, yet we have to make a choice whether to stay alive or ???. I sympathize with my grand niece (10 years young) and other little diabetic kids who have to take insulin for the rest of their lives, starting at a very young age. Life is a gift we should appreciate and need to take care of. Hang in there and tell us what caused you to develop this feeling after 9 years!

 

[Woodbutcher]

I'm sorry to hear you're having some head trouble with Warfarin. I feel the same way about it myself. Although after 9 months on it the only frights I've had are waking up in the night realising I've forgotten to take it ! Then it's a grumpy dash down the stairs to find it.
There's been lots of talk here in the UK of a new drug to replace Warfarin, lots of people are already using in a testing situation and it should be on the market in the next 5 years. Seems to have a slight side effect that they're working on of causing heart attacks !! So, I guess it's back to the drawing board to iron out the glitches !
My advise would be to keep taking it, stop listening to the hype and live your life.
My range is 2.3 -3.2 officially but having a better understanding of the drug myself I'm quite happy if it stays within 2 and 4. The surgery flap a little if it creeps outside of my range but it I just keep taking my 4mg a day and it usually settles back on it's own. I think it's normally down to having a bug or eating or drinking something different. You should be more careful about your outdoor activites too. Having said that I was knocked out by my surfboard (long board) a few weeks ago, but came around fine, yesterday I was bungy jumping, which was really good fun and wednesday I set off on a thousand mile solo bicycle ride across france ! So it would seem that taking Warfarin has just served to make me even more active not less ! Taking it, and the reason I'm taking it has provoked me to stop making decisions based on my fear of failing, and just doing it anyway. There's a very fine line that I'm all too aware of now between life and death and I recon the life bit is the best bit so keep taking the pills !

 

[tex]

I to am on Warafrin and have been for nearly a year now, yes i have had a few problems, firstly when i first started taking it, and again this last month, this was due to me been taken off it for an operations, but im glad to say im nearly in range again 2.3. my range is 2.5-3.5, so im nearly there. I am on 10 different tabs now each one helping me stay alive. Yes sometimes i do get down about taking them all, i thought once i had my new valve and the other fixed the tablets would get less, but that wasnt the case. I have already had a TIA and a Stroke 2 years ago, and still suffer with the after effects of the stroke, especailly when im tired drag my leg more. Theres no way in the world i would ever want to go through that again so taking 3 little tablets a day isnt a problem for me, and if those 3 little tabs stop my family having to go through what they did before, theres no choice tablets win hands down.
If you dont take it theres a good chance your family and you will go through what we all have and i wouldnt wish that on my worse enermy.
If you want to tell people the reason why you feel like you do this is the place to get the help and advice you need, they have been brillant with me when i have problems, so please share with us all why you feel like this about them little pills.
Take care
Jane

 

[tobagotwo]

Woodbutcher is correct about one of the drugs, and I would expect some more disappointments in the future as well. Testing for long-term use brings out a lot of things that a more usual, short-course prescription never has to consider.

Look what has happened to NSAIDs. They're without question the best thing that ever happened for the quality of life of people with arthritis, but at certain concentrations they can cause a slightly higher risk of heart attacks over time. At this point, more and more patients are determining that the improvement in their lives is worth the elevated risk and going back on them again. All drugs that are effective for good purposes also have some potential for bad outcomes.

However, the ACT compound I was referring to is not the one Woodbutcher has been reading about (there are several in various stages of investigation and testing). It's still on track.

Best wishes,