getting off coumadin

Don wrote:

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Fishro: Thanks .....Did you and do you still side effects like me...tired, achy, joints hurt, little red bumps, hives on occasion, purple skin patches, cold (now not as much), lethargy, blurred vision, a bit of anxiety, just a general awful feeling?
This stuff is nasty!

Don,
Tired all the time, have to make myself get out of bed every day, both legs hurt and muscle cramps also but they really ache at night as I developed neuropathy in my legs and arms As for the anxiety and depression i never had before I've have tried several antidepressants and none work, currently taking Ativan but can't stay on it for long as it's very addictive. Also have a lot of nausea and no appetite.
The best medicine i have found is to get as much exercise as possible, if you can, even just walking, it seems to help the anxiety some but doesn't do much for the aches and pains. I also take B complex vitamin daily for my nervous system which I think seem to help with the anxiety some. My problem is I had PE's in both lungs along with all the DVT's and had COPD before all this started so stay short of breath all the time.
My hair started thinning also; how about yours?
Hope you start feeling better soon but could take a while from my past experience. Nothing personal but glad I'm not the only one that is experiencing these bad side effects

Fishro wrote:

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Don,
Tired all the time, have to make myself get out of bed every day, both legs hurt and muscle cramps also but they really ache at night as I developed neuropathy in my legs and arms As for the anxiety and depression i never had before I've have tried several antidepressants and none work, currently taking Ativan but can't stay on it for long as it's very addictive. Also have a lot of nausea and no appetite.
The best medicine i have found is to get as much exercise as possible, if you can, even just walking, it seems to help the anxiety some but doesn't do much for the aches and pains. I also take B complex vitamin daily for my nervous system which I think seem to help with the anxiety some. My problem is I had PE's in both lungs along with all the DVT's and had COPD before all this started so stay short of breath all the time.
My hair started thinning also; how about yours?
Hope you start feeling better soon but could take a while from my past experience. Nothing personal but glad I'm not the only one that is experiencing these bad side effects

Wow....I hope you feel better as well. So far I have not lost any hair nor has my hair thinned but I can tell you this drug should be banned. Simply as that and further that any doctor who prescribes this drug should first take it themselves. Awful is an understatment. Thanks

Don wrote:

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Wow....I hope you feel better as well. So far I have not lost any hair nor has my hair thinned but I can tell you this drug should be banned. Simply as that and further that any doctor who prescribes this drug should first take it themselves. Awful is an understatement. Thanks

Don,
Some of the Issues I'm having may be due to the Blood Clots I have, not to just being on Warfarin. I had minor lung issues before the PE's, Im not a Dr. and can only tell you my personal experience.

i will be off of coumadin for 3 days starting this sunday.for dentist this wednesday coming, then i go back on it at 12:00 p.m. will i be okay .

what are the long term effects of warfarin on your organs

To all: I stopped taking warfarin about 6 months ago and I still have side effects which include, pain and aches all over and in legs, headache, upset stomach, heart pounding on occasion, tiredness or rather "true" fatigue. I have been told that these side effects are very similar to those of chemotherapy and the fact is they are!

My question to anyone is how long does it take for your body and your mind to get back to normal? This is one drug, no one should ever be placed on.
Lastly, one doctor told me very clearly when I told him I was taking coumadin "that coumadin interacts with everything"....scary.

Thank you

Don,
I'm sorry I can't tell you how long before warfarin stops giving a person side effects. Some seem to 'bounce' right back ---- others, not so lucky. And yes, it IS a lot like chemotherapy! And possibly just as dangerous, but possibly also as necessary.

"Bouncing back" might have to do with the state of their health before taking the drug. In my case I was already debilitated by Lyme disease but Coumadin added to my profound fatigue.(I'm now on C. for life due to having 2 PE's in a little over a year.)

Don, were you feeling o.k. before you had a clot?

cave76 wrote:

Don,
I'm sorry I can't tell you how long before warfarin stops giving a person side effects. Some seem to 'bounce' right back ---- others, not so lucky. And yes, it IS a lot like chemotherapy! And possibly just as dangerous, but possibly also as necessary.
"Bouncing back" might have to do with the state of their health before taking the drug. In my case I was already debilitated by Lyme disease but Coumadin added to my profound fatigue.(I'm now on C. for life due to having 2 PE's in a little over a year.)
Don, were you feeling o.k. before you had a clot?

Yes. I was feeling pretty good till the dvt occurred. Then my nightmare began with coumadin. I just thought all the side effects were a result of the dvt and not the coumadin. Little did I know. I can say withuot question I will never take another "pill" presribed by some doctor ever again. Thanks

cave76 wrote:

Don,
I'm sorry I can't tell you how long before warfarin stops giving a person side effects. Some seem to 'bounce' right back ---- others, not so lucky. And yes, it IS a lot like chemotherapy! And possibly just as dangerous, but possibly also as necessary.
"Bouncing back" might have to do with the state of their health before taking the drug. In my case I was already debilitated by Lyme disease but Coumadin added to my profound fatigue.(I'm now on C. for life due to having 2 PE's in a little over a year.)
Don, were you feeling o.k. before you had a clot?

Cave do you have a blood disorder that is causing these PE's and how long were you on C with the first PE? How long were you off C before you got the second PE?

I am 34 years old and developed a PE after having surgery in December 2010. I was finally taken off coumadin after a whole year. While I'm truly happy to finally be done with it, I'm a little nervous about what to expect. It's only been two days now!

Congratulations! I felt so much better once I got off coumadin. Best of luck to you!

Tawaga wrote:

I am 34 years old and developed a PE after having surgery in December 2010. I was finally taken off coumadin after a whole year. While I'm truly happy to finally be done with it, I'm a little nervous about what to expect. It's only been two days now!

Brynn wrote:

Congratulations! I felt so much better once I got off coumadin. Best of luck to you!
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Hi: Can you tell me how long it took once you were off to really start feeling like your old self? I have been off about 6 months or so and still feel these awful side effects.

Please tell me. Thanks

cassandra wrote:

<quoted text>I have been on coumadin for the last 14 years. The doctors says I no longer need to take it. I was misdiagnosed

Did you titrate off it or what?

Brynn wrote:

Congratulations! I felt so much better once I got off coumadin. Best of luck to you!
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Are all of your side effects now gone? If so, how long did it take please and if not what percent back are you?

Thanks

How do "they" determine you can stop your coumadin? Seems like you have TO KEEP taking it to keep your readings at a good level. Mine is between 2.4 and 3.0. If I go under 2., my dose is upped to 7.5 to bring me back up....(normal dose is 5 mg) If I go over 3, I have to (1) cut back on any broccoli, spinach.. etc and (2) take my 5 mg every other day for a week. So... I can't figure out how to get off this crap... I would prefer taking aspirin (81mg) twice a day to thin my blood for atrial flutter..(not fib)

Hi everyone. I'm a 19 year old male. 3 months ago I developed an unprovoked blood clot in my lower thigh - Average size. It has been a nightmare since taking 8.5 mg of warfarin because I haven't felt the same. I feel cold at night, weaker, always paranoid about getting cut. I also get some sort of anxiety every now and then where I get nervous and my heart starts beating a little faster than normal and I feel light headed thinking I have a PE and I'm going to just faint and die. I just saw my specialist yesterday and he did nothing for me but schedule another appointment in a year (May 3, 2013) to talk about it again and I will still be taking warfarin not to chance it and develop another blood clot. I have no genetic history of blood clots and no good reason for this happening therefore it is considered unprovoked. The shitty part about all of this is that I compete in amateur boxing and strictly watch my diet to stay healthy and in shape. And this blood clot has taken everything from me and crushed my dreams with boxing. I can't compete now nor spar due to the blood thinners. I'm thinking of going another 3 months on warfarin due to a bit of swelling still around my ankle, hoping that it will eventually go down back to normal. And tell my Dr. that I want to get off of it and see what he says. I can't live like this as I am a go getter in life and love competing in sports such as boxing. But now I feel half of what I used to be and I'm only 19 years old! I just wanted to share my experience and support anyone going through the same thing as it has been a rough ride so far. My specialist did tell me I can go back to exercising and at least train in boxing but no contact such as sparring. This did lift my spirit and I will get back into shape and be healthy again. I just want off of this damn warfarin!

Bonnie,
If these were your first clots then and you have no genetic reasons for them or for other reasons I won't go into right now you MAY be on Coumadin for only between 3 to 6 months.

That's the average for first time and 'unprovoked' DVTs.
That's also the average time for clots formed because of surgery.

Your question is too difficult to answer with any certainty because we don't know what's in your medical history.

Some people, after having had the clot travel to their lungs or ??AND IT'S THE SECOND TIME, will most likely have to be on Coumadin for their life, at least at this point that's the accepted course.

Remember, most people will answer according to what's happened to them----- and that doesn't stand true for everyone.

I decided myself that I would not take it anymore.
Do the research. The stuff is rat poison. It does more harm than good. And the pharma industry just cares about money. I've been taking only herbal supplements for a year now. And I am fine. I will not succumb to any more medical establishment tyranny.
Sometimes we have to take our heads out of the box and think for ourselves.

Ward wrote:

I stopped taking Coumadin today. Have been taking for 2 years and developed eczema, neuropathy in feet and now having numbness in hands and fingers. How long does it take for Coumadin to get out of your system??

A similar thing happened to me. I have neuropathy in my feet probably from the Warfarin. The Dr told me that it will never go away...and that I'll have to live with that malady. what a bummer.

I developed a DVT in my left in April 2006 due to the birth control patch and me smoking. It is now May 2012 and I am still taking coumadin. I had 2 stints placed in my leg and I get INR's done monthly. I have not had another blood clott issue since my first major one. I quit smoking in June of 2011.
Just yesterday I asked my doctor if we can try to take me off of coumading. I had surgery in 2009 to get my tubes tied, I have quit smoking and I found my biological family and they do not have blood clotting issues. He said he would like to bring me back in a month to do D-dimer test on me. It is a very scary thing to be on coumadin and to also come off coumadin. If you don't have a docotor that listens to you, find another one for your health and for peace of mind.
I have been a pt for 3 years at this office, all the nurses know me and they treat me like "family" I am only 28 years old and I have 2 kids that are 8 and 6. I want to be healthy for them. It is important for all of us to research our illness and try natural ways of dealing with this. I priced out INR test's without insurance and they are $75. If we experience problems or symptoms of a blood clot, we need to seek medical attention and let doctors know we have blood clotting disorder and need to be adequately tested. If your legs have symptoms ask for a doppler ultra sound of the legs. They can do a CT scan of your body as a well as an ultra sound on certain areas.
I would love if this topic was more important to medical providers. I am praying for healing and I pray that anyone dealing with this situation finds health and peace of mind. Good luck to everyone in the future.