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Coming off Warfarin
Started by Sarah
Posted: January 6, 2009 at 19:21
Hi all,
I'm back for a bit of advice/your experiences. I'm about to go off warfarin after being on it for nearly 11 months. My history with dvt is: was taking birth control pills, had recently fallen on left hip and fractured elbow in the process; was quite a bit more sedentary as a result. I've been on warfarin longer than they wanted me to be, but did so because I wanted to continue it over the holidays because of air and car travel.

So, I'm contemplating weaning myself off of it, simply because I think it would be easier on my peace of mind. Hemo did tell me however that I could quit cold turkey. I would like to start taking something in place of it, perhaps fish oil or vitamin E, if for no other reason than the "placebo effect"... I've gotten so used to taking my meds at 7 pm every day that I think I may panic if I don't do that any longer.

For those of you who have come off warfarin, what has been your experience? any body re-clotted? anybody taking natural supplements in place of warfarin? and... anybody get their old full head of hair back!? I would really like hearing your experiences.

Re: Coming off Warfarin
Reply #1 by sarah
Posted: January 7, 2009 at 05:28
I would really like to get some advice/feedback and so, refuse to let this post get buried. Look forward to hearing from someone.
Re: Coming off Warfarin
Reply #2 by Justin
Posted: January 7, 2009 at 05:38
Sarah, I personally was taken off the warfarin cold turkey. I have checked out very well. However I do make a point to work out eat healthy and do not smoke. Those things help me to keep healthy. I did do those things before with the exeption that I was a smoker, now quit for 1 1/2 years. I think your doctor watching you will know whats is best for you, and you should always be aware of any signs or symptoms.
Re: Coming off Warfarin
Reply #3 by Sarah
Posted: January 7, 2009 at 05:44
do you have residual clot? my biggest concern is reclotting because my blood flow is not normal through that leg any longer. It has opened up but vein diameter is now smaller. How long have you been off warfarin? did you have a large clot? mine was abdomen/groin to below knee.
thanks, Sarah
Re: Coming off Warfarin
Reply #4 by Justin
Posted: January 7, 2009 at 06:35
I am not sure about the residual clot, do not think so. I had a large clot from ankle to groin. It was April 2008 when I stopped with the warfarin
Re: Coming off Warfarin
Reply #5 by Diane
Posted: January 8, 2009 at 01:22
I have had a dvt in leg for 8 months. Sonogram now shows clot is gone and will be taken off blood thinner in a couple of days. Wondering why my led still feels heavy and tight. Any answers? Thanks
Re: Coming off Warfarin
Reply #6 by Justin
Posted: January 8, 2009 at 04:24
Do wear compression stalkings? I did for over a year, I no longer get the heavy tight feeling in my leg. I have heard some people say they have had it for a long time.
Re: Coming off Warfarin
Reply #7 by Joe
Posted: January 9, 2009
I would ween myself off... last time I just stopped... and I felt the tingles and pull in the legs... However I did not clot ...

This time if I come off, it will be over a two week period... taking 1/2 dose for the first week... and then 1/2 again for another week... Whats the big deal?
Re: Coming off Warfarin
Reply #8 by Sarah
Posted: January 9, 2009 at 02:27
why did you have to start up again?

Justin, when did you get your clot? I still have the "pull" and heaviness although it is not bad. It's encouraging to hear that the tight feeling went away for you... about after how long? Did you have thrombolysis? In answer to your question Diane, I believe the heaviness is due to incompetent veins. Although your clot may be gone, it may have damaged the valves in your veins and therefore the blood has a more difficult time getting back up, hence the tight feeling.

Re: Coming off Warfarin
Reply #9 by Justin
Posted: January 9, 2009 at 03:36
Sept. 2007. About 4 months ago I had to stop wearing the stalking because of a foot surgery. (Minor) The pain and swelling were not there.
Re: Coming off Warfarin
Reply #10 by natalie(rep.ireland)
Posted: February 24, 2009 at 18:32
hi all i had a p.e in may 2007 and i was on warfarin for 12months.i hav had no more blood clots.i eat what i like, i enjoy life and a few drinks at weekend with my mates.i do get pains in leg when weather changes.i used to get paranoid at the start when i stopped the warfarin.my doc was sick of seen me...there was no side effects coming off it. i dont miss the 6oclock alarm to take it and the visits to nurse to check inr.i do be afraid of a p.e. returning as im not even 30 yet and i dont want to die.but if my time's up its up.i remember the sign's i got for a pe.pains in lower back kinda under my right arm.and i was sweating and kinda tired.i had no shortness of breath.just a weird feeling in my chest like a chest infection.i looked great and didnt realise i had a p.e and other clots in my right lung.i was lucky i demanded a ct scan at hospital as antibotic's werent helping.i reckcon you will never be the same after a blood clot.it changes yah as a person..you respect life more and notice the world around you.
Re: Coming off Warfarin
Reply #11 by Pam
Posted: February 25, 2009 at 23:16
I was taken off warfarin cold turkey after I suffered a hematoma after falling in Italy while on holiday. I'd had a massive DVT (was actually a PCD) in October 2007, and was taken off the warfarin in August the following year. I have since had many blood screens done to determine the cause of the PCD, but my blood is clear. My hematologist did say that due to the severity of the clot, I should take aspirin every day just to help keep the blood a little bit thinner, and that should I travel anwhere on an aeroplane for longer than 4 hours, that I HAVE to get a heparin injection before the outbound and return journeys. This will be the case for the rest of my life. My leg took a hell of a long time to feel normal, and it feels absolutely fine now. The thigh is still significantly larger than my right thigh, but that is because the valves were so badly damaged, and it will likely never recover fully. I will admit to not wearing my compression stockings in about 8 months, as I can just not be bothered, which is admittedly, rather foolish of me. But yeah, talk to your GP about aspirin, as it is a much healthier alternitive to warfarin.
Re: Coming off Warfarin
Reply #12 by Ron
Posted: March 1, 2009 at 12:35
Diagnosed with extensive DVT Jan 19, 2009 in left leg, clot runs from groin area all the way down the leg. Have been or warfarin for bout 1 month, doc says it will be for 6 months, inr range of 2-3. Have read about some studies of maintaining low grade warfarin therapy for inr 1.5 to 2 and seems to be beneficial. I am currently wearing compression thigh high hose (30-40 compression). It was pretty amazing when the first time I put on the hose, my leg felt immediately better. Doc says to plan on wearing hose for 5 or 6 years at least. Eveything I read says minimum of 2years for compression hose, 2 years seems to be somewhat of a critical time period for re-occurrence. Assuming that I come off of warfarin, I plan on eating foods that supplement anti-coagulation omeag3 foods(Salmon and flax seed), onions, and garlic. Think I will seek a nutrionist advice on list of foods to help.
Re: Coming off Warfarin
Reply #13 by Char
Posted: March 1, 2009 at 16:18
Hey Ron, I take Vit E, Aspirin, flaxseed capsules, etc along with my Warfarin. This is with Hematologist permission to stay on low dose Warfarin, works great if I do not eat any veggies with Vit K. Keep my INR close to 2, now INR 1.7.
Had my DVT/PE Feb 08 and was on sliding scale Warfarin 9 months, off 6 weeks for genetic testing. Tested positive Protein S and back on warfarin for low dose therapy.
I wear knee high hose 20-30; only take them off at when I lay down.
Re: Coming off Warfarin
Reply #14 by Ron
Posted: March 2, 2009 at 11:22
Thanks for response Char. How are you getting along now? Are things back to near normal yet? Who suggested the low dose warfarin, you or your doctor?
Re: Coming off Warfarin
Reply #15 by Char
Posted: March 2, 2009 at 11:38
Hey Ron, the low dose Warfarin was my idea after much reading about the pro's and con's, talking to my Vein Clinic doctor. He is very much for low dose Warfarin after being on Warfarin 6 months or more. Plus my right leg was never swollen, lungs cleared up quickly. Never had big symptoms other than being very short of breath before taking Warfarin. Darn still have that only as a side effect of Warfarin.
Have had a few CT scans to check on the lungs, all clear. Support hose is very important along with the low dose.
The high doses of Warfarin made me dizzy, none of that with the low dose and I want to go lower. Deciding on my next alternative to enhance Warfarin.
Re: Coming off Warfarin
Reply #16 by Nicole
Posted: April 28, 2009 at 11:34
Im 24 and I got a DVT in my right arm October 2008. I was in hospital for a week, then put on warfarin. The tests showed I had Factor V Leiden - inherited from my father. They think the Factor V combined with the pill caused the DVT.
I have recently been told I can come off it in two weeks time.
I am worried about coming off it. The DVT has reduced in size but is still there. I have only been on the warfarin for 6 months.
My arm still hurts from time to time. I also have to type a lot for work and worried that this had some affect on me getting the clot to start with.
Re: Coming off Warfarin
Reply #17 by suzanne
Posted: April 28, 2009 at 13:59
nicole,are you from the uk?i could be off warfarin in may,im 27 got dvt in left leg,was wondering if you was re scanned before they said you could come off warfarin,im hoping i wiil be.
Re: Coming off Warfarin
Reply #18 by Nicole
Posted: April 29, 2009 at 11:45
Suzanne I am in Australia. I was re-scanned a couple of weeks ago and whilst the DVT had reduced it was not gone. My specialist said it probably would never go away. He said I did not need to stay on warfarin past 6 months.
Thats the main reason I am concerned - the DVT is still there. I have also been feeling really sore around my ribs and right arm (where the DVT is) and not sure if its just cause I am anxious about next week and stopping the meds!
Re: Coming off Warfarin
Reply #19 by Nancy Dutton
Posted: May 3, 2009 at 21:44
I am Nancy and my doctor is taking me off warfarin cold turkey
after being on this medication sine 1990 and now its 2009 is this
safe being taking off cold turkey like this im real worried
of blood clots


Nancy Dutton
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