Coumadin Long Term

[Fernac911]

I will be having surgery (AVR) next month and wanted to see what problems people have faced when using coumadin long term.

Thanks,
Fern

 

[clay_from_nj]

I think you'll find that the only problems people have had is goofing up and failing to take it when they should. I'm a relative short-timer, having been on warfarin for just over a year, and have had absolutely no problems with it. It was a little yoyo'y at first, and now will probably need a small adjustment, due to a gradual trend that is just becoming evident, but overall very easy to deal with.

 

[dick0236]

Take it as prescribed, test routinely, use a little common sense......and live a normal life.

 

[pellicle]

I'm also a newbie but my short experience is as stated above

The only thing I will add is keep doses regular. Meaning as little as possible variation between doses. Test weekly avoid adjusting the dose unless *really* necessary. Even if your INR drifts a little out of range don't change the dose till you are sure it is a trend not a variance.

Eat drink and be merry

 

[Fernac911]

Most of the things I read about coumadin are bad. A lot of people talk about being tired all the time, joint pain, and hair loss. I was planning on getting an On-x valve to avoid a second surgery, but now I rather get a tissue valve and just face another surgery in the future.

This is the site that I have been looking at:
http://m.topix.com/forum/drug/coumadin

 

[pellicle]

Drug companies dont make much money out of Warfarin. The medical literature seem not to support your concerns, what are your sources?

A lot of people talk about being tired all the time, joint pain, and hair loss

those are things most elderly report ... even if not on Warfarin. Dick has been asked about hair loss (even libido loss, discussed here if you are able to use google to search) .

AFAIK the main issue orthodox medicine has with warfarin is bleeds , and these are mostly attributed to INR management failure.

As with most things, follow the money trail. Self monitoring does not generate big incomes for anyone but does yeild the best outcomes (stacks written on that, its almost QED). Surgical clinics dont get as many redo ops with mechanical valves. What do those numbers say to you?

Try searching reliable sites, try using google scholar ... hell, try reading here?

If you are a female of child bearing age and wish to get pregnant there are sound reasons to choose tissue.

It is your body, weigh the facts (not the fictions) and make your choice for yourself But if you want a tissue valve, then by all means do it. There is no major significant disadvantage to a tissue valve (aside from an eventual redo).

Don't ask here if you're already sure of the answers. Questions are for people willing to listen to answers.


Best wishes

 

[clay_from_nj]

I have to agree with Pellicle and add that some of the people who report these crazy side effects may want to adjust their foil hats. I have learned to be very skeptical of these kinds of reports as I come from a family full of hypochondriacs.

 

[dick0236]

Most of the things I read about coumadin are bad. A lot of people talk about being tired all the time, joint pain, and hair loss. I was planning on getting an On-x valve to avoid a second surgery, but now I rather get a tissue valve and just face another surgery in the future.

This is the site that I have been looking at:
http://m.topix.com/forum/drug/coumadin

being tired all the time???......not true for me. I have always been very active and have always had a lot of endurance. At 78 I still go to gym 5-6 times per week and still often walk/carry nine holes of golf.

joint pain???.....never had this except for a couple years when I took statins for cholesterol. Stopped statins and pain went away.

hair loss???.....still have a FULL set of hair and have to go to barber monthly for trim.

Coumadin/Warfarin has never been a problem for me in ANY way except that once you go on it you must "take the med as prescribed and test routinely". If you can't develop that simple dosing regimen.....DON'T GO ON WARFARIN.

There may be reasons to choose a tissue over a mechanical valve(age, child bearing, other medical issues)....but not the reasons outlined in your post......at least not in my case.

 

[Fernac911]

Thank Everyone for replying!!!

I'm just really nervous. I have my surgery scheduled next month (On-x valve), but the other day I googled coumadin side effects and started freaking out.

I just need to relax and stop being so paranoid. I'm seeing a psychiatrist tomorrow to help cope with the anxiety.

 

[Heart Of The Sunrise]

I initially was fearful of Coumadin as well. But, once I did my homework I was more scared of multiple AVR's in my life time to replace a tissue valve.
It is a very personal choice. I am very happy with mine. When I left the hospital I was told to keep my INR between 2.0 and 3.0. But, my cardiologist has me between 2.0 and 2.5. No problems.

 

[Jamey T]

I agree with what these folks are saying. I am going to turn 50 in less than a month, and have more hair than lots of 30 year olds I know. I noticed no difference in hair on my head, except that it is spreading elsewhere!
Warfarin is really easy, and I never took any medications before my surgery, so in the last two years, I have learned to adjust to a routine. There have been NO other changes in my life do to my surgery, or my medications. FYI, I just took up kayak fishing last summer, and got new kayak for Christmas.
I only have very minor and occasional joint pain, and I just convinced my GP to let me try an Omega 3 and stop Simvastatin. I started this yesterday. Most people my age would attribute the pain to my age, but I am not as old as my years! I am also not ready to give in to that excuse.
I know when I made the decision to go with a mechanical valve I didn't think I wanted to do this more than once. Now I am sure I made the right decision.

 

[ski girl]

Hmmmm. I agree with the above about these side effects. The main side effect you will experience is that you'll probably die of something other than a heart problem.

I'm tired sometime - which I attribute to the training regimen as prescribed by my coach (running, mountain biking, paddling) 12+ hours a week. My joints hurt sometimes too, mostly cos I've fallen off my bike and landed on one of them (oh - and not bled to death either). And I still have to pay $115 for a haircut cos none of my hair has fallen out.

My first valve was tissue, now I have a mech valve, so I've swung both ways. Neither valve type has had any appreciable effect on my life - other than allowing me to live it MUCH more fully than when I had the rubbish valve I was born with! No need to be nervous - this surgery will be a life-altering experience in a very VERY good way.

 

[Jason]

Good advice here to date. I can add my experience, which is that I have been on warfarin for coming up on three years. I haven't had any issues with the regimen, and am enjoying an active life of beach walking/running, biking, and fishing/crabbing in sunny Queensland. I was very nervous about the drug going into my surgery, and most of it was generated by Google. I think the best advice I could give to someone looking into a surgery would be to disconnect from the internet and listen to your doctors as you ask lots a questions and get lots of answers, as a lot of misinformation and biased information is available at the search engines. I also know that if someone had taken away my internet I would have gone ballistic, so I understand where you are at! Good luck, read lots on this site, and make the right decision for you.

 

[pellicle]

Jason

crabbing .. Half yer luck mate!

The key to internet searching is to avoid google plain and use google scholar. Searching anything other than peer reviewed is like listening to talkback radio or searching Today Tonight for facts

 

[dick0236]

Hmmmm. I agree with the above about these side effects. The main side effect you will experience is that you'll probably die of something other than a heart problem.
.

This is exactly what my Primary Care Doc told me a couple years ago........and it's beginning look like he is right.....although there is no way I would have believed that "way back then". Goes to prove that we need to live my lives "one day at a time".

BTW.....$115 for a haircut?? Glad I am an old man 'cause I still get mine for $9....with my $1 "senior discount" LOL.

 

[njean]

I guess I'll throw in my "nickle's" worth of chatter to this thread.

If your choice of valve is stressing you out because you'll have to be on anticoagulants (coumadin/warfarin) the rest of your life, well you can just put those worries aside!

I am a long-time user of coumadin, since 1975, and have lived a normal, active lifestyle. I've undergone several other surgeries in my lifetime besides the 3 OHS, also without major problems. I do take my medications as I should, keep a close eye on my INR (I have my own home monitor), and go on with the business of living.

You will hear lots of horror stories about "blood thinners" from people who do not understand the medication. It is manageable and you will be just fine with it.

Good luck and take care!

 

[neil]

i think most do well on coumadin, but some just choose not to be on it as it can cause problems, if it was just a case of popping a pill i think we would all be getting mechs, as ive said before even the experts cant agree on it, i was giving all the details from the experts on coumadin and decided it wasnt for me, the medical world are trying to pull all the stops out to replace coumadin which tells me all i need to know, gladly most do well as you can read for yourself on here,

 

[KristyW]

the medical world are trying to pull all the stops out to replace coumadin which tells me all i need to know

Coumadin/warfarin makes the pharma companies NO money. Its patent is long expired and the generic is available for a 90 day supply for $10. Of course they're trying to find a replacement! They are in business to make money. Doctors think it's voodoo because they don't understand the drug, but the patients do if they take the time.

Now as for getting a tissue valve so you don't have to go on anti-coagulants, well you may have to anyway. Heart surgery tends to disrupt the electrical system in the heart, and if you develop atrial fibrillation, you'll be on anti-coagulants anyway.

No matter what decision you make, it's the right one for you. Be informed of the downsides and the advantages of both options. No matter what, this is lifesaving surgery.

 

[Heart Of The Sunrise]

Can significant changes in the day to day stress level cause your INR levels to go up significantly and in general become unstable.
I have been rock solid 2.4 to 2.7 range for months. Now I have had a low of 1.9 and most recently today 3.4.
No dietary or other changes. Any thoughts? Thanks.

 

[hiboo2u]

115 bucks for a haircut would cause me pain! SKI GIRL