DVT deep vein thrombosis forum

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Stopping warfarin completely
Started by Bubbles20
Posted: January 31, 2009 at 12:52
I have been on Warfarin for 4 years now after being diagnosed with a two DVTs when i was 16. Being told i would be on long term warfarin it is now 4 Years later and im still in the same routine going to the doctors taking blood test every other week.

Last year i had a scan showing no clots in my leg but my doctor still says i should be taking warfarin just in case. I don't want find myself 20 years later still going to the doctors. Im 20 years old at the peak of my life, i eat healthy and excercise regulary.

Now ive stopped having warfarin for a week now and my doctor doesn't know. So far i havnt had any problems. I really want to get off this medicine because it isnt healthy for me in the long run.

I believe i can come off warfarin forever i just need some ideas on how i can do this.

Thanks
Bubbles
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Re: Stopping warfarin completely
Reply #1 by suzanne
Posted: January 31, 2009 at 13:06
i dont think you should stop taking your warfarin without talking through it with your doctor,your doctor will know what he/she is on about,should really listen to them.
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Re: Stopping warfarin completely
Reply #2 by Char
Posted: January 31, 2009 at 13:37
Important to be wearing support hose and have you had any genetic blood work? Suzanne is correct, talk to your Doctor, I am a lifer and I let my Hematologist know that I will only take Warfarin 5mg, nothing more as it makes me dizzy. No dizziness with 5mg and I am back to normal activity.
If your DVT's have a genetic cause living healthy will not prevent or cure more clots.
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Re: Stopping warfarin completely
Reply #3 by chris jones
Posted: January 31, 2009 at 14:11


Please consult your Doctor for advice on the Warfarin stoppage.

There may be some underlying cause for your DVT's and by keeping the blood a wee bit thinner this will help the continuation of flow through out. Warfarin is the UK's choice of anti coagulant and i do feel that most of us who are on it will be for life.
I know its a pain at times having to watch the old INR and getting regular bloods checked but its for the best and i am sure they had thier best intentions at heart whilst diagnosing.

Failing that,,,,,,,,turn vegan,,,,overnight cure!,,,see Tom.

Be safe all you lot.

Chris in still cold but bright Bonnie Scotland.xxxx
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Re: Stopping warfarin completely
Reply #4 by sonia
Posted: January 31, 2009 at 14:19
im on warfarin for life and told there are no probs being a lifer.why is it not good for you in the long run?my GP isnt much good so just wondered if youn have been told something i havent!incidentally i dont blame you making decisions for yourself.you know your body and i seem to have made most of my own decisions since i was diagnosed with this flipping thing!
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Re: Stopping warfarin completely
Reply #5 by sonia
Posted: January 31, 2009 at 14:20
PS.where you from chris??im in cold but cloudy cumbria!
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Re: Stopping warfarin completely
Reply #6 by chris jones
Posted: January 31, 2009 at 15:35
Sonia,

Aberdeenshire!

Its bloody cold the day like!!

Chris.x
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Re: Stopping warfarin completely
Reply #7 by Tom
Posted: January 31, 2009 at 17:29
Bubbles,
See post "spotty skin", reply #3 for more information on side effects of drugs, and why you are smart to not want to be spending a life on drugs. Also, check out Maisa's story on "Drugs?" post. Have to run.

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Re: Stopping warfarin completely
Reply #8 by Char
Posted: January 31, 2009 at 17:39
Forget #3 that is pure crap, has nothing to do with DVT and no vegan diet will cure or prevent DVT from any cause.
Cannot eat green vegetables except in small amounts while taking Warfarin, I still eat a balanced diet. Even on Warfarin I am very active, in fact my strained hip gives me more problems than Warfarin. The only things I am not doing is jumps and heel splits on skates, mainly cause of the hip.

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Re: Stopping warfarin completely
Reply #9 by Bruce
Posted: February 1, 2009 at 01:09
My specialist told me in 2003 that it may be dangerous to stop taking Warfarin without a gradual reduction of dosage over a week or two. I think it was something to do with the blood going straight back to its normal coagulation properties after being anti-coagulable for some time. This may cause a DVT to re-occur.
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Re: Stopping warfarin completely
Reply #10 by Diane
Posted: February 1, 2009 at 03:11
Bubble20,

My Hematologist had me stop Coumadin cold turkey after she got the results back from extensive testing we did for genetic blood clotting disorders. Since all tests were negative she told me that the risks outweighed the benefits in my case. Each case is unique and you should be seeing a Hematologist to help you make this decision. A GP is simply not qualified to help you with a decision as important as this. My GP was totally useless and would have had me on Coumadin for life.
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Re: Stopping warfarin completely
Reply #11 by sally
Posted: February 1, 2009 at 10:41
diane-did you have the tests done while still on coumadin?are they reliable?
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Re: Stopping warfarin completely
Reply #12 by Diane
Posted: February 2, 2009 at 05:19
Hi Sally, you are correct that you need to be off Coumadin for a couple of weeks before the genetic testing can be done accurately.

These are expensive tests so you want them to be done accurately of course. I had this testing done in 2005 while I was off Coumadin prior to knee surgery. Then was put back on Coumadin right after surgery for 3 more months. By the end of that 3-month period the Hematologist had the results of the genetic tests back, and she felt I should stop Coumadin that very day.

I did stop it and 3 1/2 years later I have had no problems. My DVT was caused by May-Thurner Syndrome (Iliac Vein Compression Syndrome), so my case is a little different, but in the absence of blood clotting disorders it may be overkill to stay indefinitely on Coumadin after experiencing ONLY ONE DVT. I understand that a second DVT puts you on Coumadin for life with no further discussion.
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Re: Stopping warfarin completely
Reply #13 by Lee
Posted: February 2, 2009 at 05:27
The inherited clotting factors testing all must be done BEFORE anticoagulation in order for the results to be reliable. Genetic testing for gene mutations are not skewed by Coumadin/Warfarin therapy. What was the cause of your DVTs?
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Re: Stopping warfarin completely
Reply #14 by chris jones
Posted: February 2, 2009 at 06:58

READ all the posts and the cause of our DVT/Pe's in clearly from not been a vegan. Never mind the congenital factors and injuries amd economy class syndromes and may thurner syndrome and genetic blood disorders its all stemmed from not been vegan.

EASY.

CHRIS JONES

Scotland.
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Re: Stopping warfarin completely
Reply #15 by chris jones
Posted: February 2, 2009 at 11:05


Lee.

My saracsm isnt directed at you at all, I just no someone will read the above!

Welcome to the forum.

Chris Jones
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Re: Stopping warfarin completely
Reply #16 by Lee
Posted: February 3, 2009 at 04:01
Thanks for the welcome Chris! I find all of this fascinating. I think when a person is passionate about what they believe in they feel that they MUST share it with everyone. I enjoy your postings. You are obviously a very passionate person.

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Re: Stopping warfarin completely
Reply #17 by Bubbles20
Posted: February 12, 2009
Ok i havnt been on warfarin for three weeks now and im starting to notice changes and my right leg is not feeling regular. i took some warfarin today im not sure if ive made a mistake
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Re: Stopping warfarin completely
Reply #18 by Justin
Posted: February 12, 2009 at 04:51
Wow, yeah bubbles you should seek medical advice from a doctor soon.
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Re: Stopping warfarin completely
Reply #19 by sonia
Posted: February 12, 2009 at 12:51
hope you are ok bubbles-let us know.what do you mean by not regular?
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