How do you come off Warfarin

It is nearly 6 months since my first bi-lateral pulmonary embolism. I expect to see a consultant for a check up and that I will come off Warfarin. How does this happen, is the Warfarin reduced over time to allow blood time to stabilise, or not?. I think that I am a bit nervous about coming off it, as I am not convinced that they really know how the embolism happened.

36 Replies

  • Hi gel1.

    First of all I think that you are asking exactly the right question of the medics. "Is it now safe to come off anticoagulants if they are not sure how the PE occurred?" Hang in there and insist that they take this concern seriously and completely satisfy you that it is safe before you stop the Warfarin. It might be good to get an interview with a senior consultant to review the issue with you rather than just work on one doctors view.

    Actually coming off is simple I think; you just stop. Your body will take quite a few days to gradually return your natural blood coagulation process during which your INR will gradually fall back to 1.0. There is not normally any need to reduce the doses gradually over a period of time so don't worry about that.

    All the best with it and do please let us know how you get on.

  • I Have been on Warfarin for a year now from getting hit by a car which caused a PE, i stopped takin the warfarin, 2 days later i was in the hospital with dehydration from a day and a half of throwing up and too many bowel movements, they must of put eight bags of fluids in me but then again i stopped takin hydrocortisone pills too and they had to shoot me up cortisone, took 3 days to come home, goin to see the pulmonary specialist next then the endocroligist? whatever he is, but the truth i will say, i have lost alot of body hair and my head is thinnin out more now than the 59 years i've been livin, gotta be these pills

  • I am having same issue and I am so upset about losing my hair. It is falling out so fast. I had an aortic thrombus and have been on warfarin for three years. My hair just started falling out about 1year ago. I was referred to a hematologist and after blood tests he says I have a clotting disorder, some name with "lupus" attatched to it but really not lupus at all. If you find a solution please share. I have read Q10 ? Is helpful but haven't tried it.

  • Ask your doctor for Apixaban, or Xarelto, or Pradaxa instead of Warfarin, and then you will not need the tiresome business of having to get your INR done regularly!

  • Hi gel1,

    After having a PE, I was put on Warfarin. My haemotologist took me off to do a lot of blood test to find out why I had an unexplained PE. I just stopped taking it. I think it was after about 14 days off, then they tested me. But I was soon put back on FOR LIFE due to factor V Leiden - but I am homogeneous (think t bbc at is right), I have two faulty proteins that affect clotting. Rare.

    I am thankful that I now know why my PE occurred and now I have come to terms with my anticoagulant regime.

    Good luck.

    Keep us informed.

  • I had never heard of this rare condition until being on this website, did you ask for blood tests or did they just do them based on your medical history.

  • Hi gel1,

    After my PE episode, I was unwell due to gyni problems, so I stayed on warfarin until I felt better and then my GP, two and a half years after my PE, refered me to a haemotalogist. He was fantastic, and he said I was overlooked and should of had a six months review as to if I needed to stay on anticoagulation. So he decided to do a large range of blood tests, but I had to come off Warfrin.

    I felt nervous stopping Warfarin, but I kept active, drank lots of fluid, wore compression stockings, etc. and kept positive.

    As I said earlier about Factor V Leiden, he diagnosed homozygosity for the prothrombin G20210A mutation (that is what my notes call it). BUT, at least I now know why I had a PE, and this makes me feel lucky I got through the PE ok, and now I can use drugs to help me.

    It was best for me to stop taking Warfarin when I was ready, because I do believe that a positive attitude helps in health.

    Try to get a good Haematologist to help you.

    Ask lots of questions.

    Please keep me informed on your progress.

    Regards. ELCgirl

  • Omg. I have Factor V Leiden too. The Homozygous gene. I've been on warfarin for 6 years and I am so ready to get off it. I'm tired of it.

  • I had a PE about 5 years ago. The cause of which remains unknown. I expect to be on Warfarin for life. There is a new drug on the horizon called Pradaxa for which there is no need for regular blood tests to check for wayward INR. However it has so far only been licensed for use with stroke victims an then only in certain circumstances.

  • When I had to come off warfarin I was told to just stop taking it and my body would return to normal. Warfarin just affects the production of clotting factors made in your body. So when you stop your body just remakes them.

    @Pete 1 - have you heard of Rivaroxaban, that is a new oral drug that has been licensed for Treatment and prevention of DVT and PE. Fireman Sam has just started on it so may well be worth asking him about it but no need to wait for pradaxa of you want to change drugs

  • Hi darksteele

    Have you been OK since stopping Warfarin?

  • Hi darksteele,

    Good reply. My consultant has just sent me a letter considering if I should use Rivaroxaban. I am very interested in hearing more about this new oral drup and will keep my eye on Fireman Sam.

    Warfarin works for me, but due to trying to loose some weight, my diet changed and then my INR went below target. So that was a worry.

    I have had three gyni surgeries and had to stop taking warfarin before these surgeries, I believe two days before the op. My INR was tested before the ops, and was 1.1. Amazing how in two days the INR can change.

    gel1 - Just keep asking the questions. I did, and eventually got answers. But now I am asking questions about these new drugs and won't change to them until I feel I want to.

  • darksteel, no I haven't heard of Rivaroxaban, Thanks for the info. I have looked at the wikipedia page on this drug and noticed that there is no drug to reverse the anticoagulent effect in the event of a major bleed. This is a bit off-putting as I also have Parkinson's Disease and have a considerable risk of falling and consequent injury that may include a major bleed

  • You have to remember than no new anticoagulant has an antidote to switch off bleeding straight away. Even warfarin with Vitamin K takes about 7 hours to be effective at reversing the action of warfarin. When I had a bleed on warfarin I was just given a new dressing, some saline and told to stay in bed. Bearing in mind I lost about 500ml from my ablation entry wound in my femoral artery! No use of any antidote for warfarin!

    If you look at the studies all 3 new drugs have lower risks of head bleeds and are out of your body in 24-48hrs once you stop taking them! So you need to factor that in as well!

    However, it is your treatment and your health so you need to talk to your doctor about whether you would rather be on warfarin with a higher risk of bleeding and all its INR monitoring but with Vit K as a “back up” or the newer drugs with a lower risk of major bleeding. I know what I would choose if I had to go back to being anticoagulated. Please bear in mind this is just my view from the research I have made. I am not a medical doctor

  • Thanks for that, very interesting. I haven't paid much attention to my medical requirements in relation to a PE I had nearly 5 years ago. I have Parkinson's Disease which has a community here in HU. PD is a very interesting illness and I tend to look more at the PD community posts.

  • I had a PE in July this year , ( no clear indication what the cause was other than I had been wearing tight Knee Pads for 4 hours ) put on Warfarin until mid November when due to side effects was put on Rivaroxoban . After 2 weeks became very dizzy and uncoordinated . Then put on Apixaban ( 2 tablets a day ) thought that was a great idea . Took first one at 6 pm . woke up next morning felt quite good got out of bed walked 5 paces and crashed out into wall .

    That was this morning , saw Dr , ummed and arrred then said stop taking anything . Now worried , is this the right way of doing it ?

  • I suffer from AFib and was on Warfarin for a few months at the start. I didn't take to it very well as a very high dose was required to raise my INR even to 2.0 which was never stable. I had sleep problems, my hair thinned and my fingernails went white, so I just stopped taking it and went on aspirin. I had an ablation and got three months Pradaxa for before and after. This drug was wonderful for me and had no side effects nor of course needed any blood tests. However, as has been mentioned, you have to fight to get this drug at all from our NHS, due to cost (Warfarin is very cheap) and to concerns about the bleeding risks.

    Don't worry about coming off Warfarin. Nothing happens at all as regards symptoms. If they advise you to stop anti coagulation, then take a low dose aspirin as a background safeguard if they think that would be a good idea.

    I still have the AFib problem and will be asking about anti coagulation on my next visit. I have been reading about a new drug called Eliquis which seems to be the answer to prayer for all of us who should be on a regime.

  • I have been at home due to sickness and decided to do some research as there seems to be quite a bit of confusion about the new oral anticoagulants.

    The National Institute for Health and Clinical Excellence concluded that treatment with Rivaroxaban had an acceptable adverse event profile compared with the combination of LMWH and warfarin.

    Pradaxa is not yet licenced for DVT and PE but when Pradaxa was licenced for atrial fibrillation the the Food and Drug Agency (FDA in America) said in a report that bleeding rates linked to new use of Pradaxa (Dabigatran) are no higher than they are with new users of warfarin. The RELY trial (one of the trials that Boehringer Ingelheim conducted) showed that major bleeding occurred significantly less often with dabigatran 110 mg than warfarin; dabigatran 150 mg showed similar bleeding to warfarin.

    I am still researching Apixaban.

    I think some of the doctors are so nervous about using them, or think they are too expensive that they are telling patients the wrong information.

  • As you may have seen previously, I am on Apixaban for 13 weeks or so having come off Plavix. I have chronic intractable Atrial Fibrillation. I was on Cordarone (Amiodarone) for about 3 years but was experiencing Amiodarone induced myopathy and made the decicision to cease taking it. There is no effective alternative but it is a very toxic and notoriously nasty drug, so I am taking a big chance without any antiarrythmic.I have had no problem with the Apixaban (Eliquis 2), and read on the net that it is the least likely of all the anticoagulants to cause bleeding.It is approved by the FDA of course and is made by BMY. You take two small tablets per day. I am 69, male and have experienced no side effects so far.Please do not confuse the uses of anticoagulants and antiarrythmics, they are totally different drugs for totally different purposes.

  • Not sure about that statement about least likely to cause bleeding. Take that with a big pinch of salt as an anticoagulant it suppose to make you stop clotting so if you have an injury you will bleed. Plus tell that to the patients in the apixaban heart attack trial called Appraise that died from excess bleeding. apixaban has had 2 failed studies, Appraise above and one of their prevention of dvt/PE following surgery but no-one tells you about that do they? You need to see the fulll picture with these drugs there is not much difference in AF stroke prevention between them but big differences in licenses and other disease areas. Question and search the internet

  • I would agree about doctors being nervous of them. At present only hospitals can prescribe Pradaxa and then only reluctantly. I have a letter from the Dept of Health saying it is my right to have this drug as I qualify on three out of five counts. However, try telling that to the local areas. It does seem to be more a question of cost than health concern. To those of us who are Warfarin intolerant, there seems to be no place to go at present.

  • Does anyone actually know how much these drugs are because we are always told they are very expensive but not what the cost is. They might be expensive against Warfarin which is over 50 years old with no patent so it will be very cheap but I wonder what it cost in todays money when it was launched?

    I would like to know how much these drugs cost against modern diabete medicines or heart medicines?

  • Eliciting any information on this is almost impossible. I do know however that Warfarin costs pennies against the newer drugs. Consider also that a whole industry and employment is based around INR testing which is unnecessary with the alternatives to Warfarin, then it becomes clearer... All anticoagulants prevent blood clotting and the objection to Pradaxa is that they have no antidote to this, unlike Warfarin which can be halted with Vitamin K injection.

    At some point you do have to take your own reins and decide the risks based on the scant information we usually have.

  • Coumadin is the tried & true drug. These new drugs that have come out, there isn't enough known of what side effects van occur. Most are told that blood tests are not needed and that is not true. I know my mother was put on Xareltto and had a stomach bleed. Then she went on Eliquis, she then became a veg,,,slept all day long and had zero strength. Now she is on Coumadin 2.5 mg and she is doing fine.. She is back out shopping and is doing 100% better. If anything every happened to her , where she had bleeds for any reason, they know a shot of K will help fast. The new drugs,, they have no idea at this point what to do.

    I would rather go for blood work every 2 weeks and know all is well, than be told to take these new drugs and have to guess, if the amount in my system is correct.

  • I have been on Warfarin for 4 years now and the new doctor is telling me that I should be off. I had multiple blood clots and they never found the source. My new doc does not recommend the new medicines. I am still inclined to stay on Warfarin. It scares me to death the idea to develop blood clots. Your answer kind of gave me reassurance.

  • I know it's too late for gel1 to read this but wanted to share my bad experiences.

    I had a PE in July due to a DVT - I didn't know I had a DVT at the time of course but couldn't understand why my calf felt so bruised so I "assume" that was it. The DVT was from over work in my opinion. We were working on a large deal in Italy putting in 16 hours a day at desks apart from meals. I ended up on Warfarin for 6 months, then came off and went to see my GP as instructed to arrange tests. He waved me away saying; "no, no we only do that if you're young".

    I had a second PE!

    Now I can't be tested because it's considered too dangerous. So to anyone my advice is INSIST. I didn't because I was convinced I'd be ok I just wouldn't stay still too long in future. I have subsequently found out once you have a PE you are often prone to them. I still have a nagging feeling that there is an underlying cause however.

  • Woaoooo....Im getting the exactly same response from my doctor. The very first Hematologist insisted I stayed on Wafarin and he didn't care I was young. He was adamant and so I did. Now, this and other doctors I've seen the last two years are trying to convince me to come off the medicine. My nurse in Landsthul even insisted I should come off since my readings are all over the place. If my readings are so crazy should I stay on the medicine? I am now so concerned and I don't know what to do.

  • It's quite likely that you will be on Warfarin forever. If the cause has not been pinned down you could be at risk of another PE any time without it.

  • Hiya I have been diagnosed recently with bilateral pulmonary embolisms, and am on rivaroxaban ... My question is, is it my choice if I want to stay on these after 6 months as this came out of the blue and no warning so am obviously at greater risk of it happening again

  • I had a calf injury back in may. a week later I had a PE. I've been on warfarin for 4 months. I just came off of the medication, because I cant go in for blood testing due to my job requirements. I'm wondering if any of you have come off of warfarin and if so, were there any side effects as you came off of the meds? I just havent been feeling to well for the past week since I stopped taking it. Not that I felt that great while taking it. LOL

  • People, understand this: Vitamin E thins blood as well if not better than drugs. Better because, unless one takes a bucket full of it, there are no negative side effects like what drugs (Chemicals) have. My wife has had long term, and on going, problems since coming off Warfarin. Vitamins, minerals and enzymes are the building block of life, not drugs. We have become a nation of legal drug addicts.

  • I have multiple clots on lungs ( p.e's) & I will be on apixaban for 6 months unfortunately my blood cannot return to normal as there is no antidote for my drug so it can't be reversed I don't even know if it's working as they don't give me another ct scan they just treat me with apixaban I've asked why I got p.e.'s but no answer and on top of this I'm now getting arterial spasms which they say are caused by anxiety I've read up on everything because nobody has been able to give me definitive answers I am scared that I'm making clots but they can't test me while I'm on apixaban I've just given up and I'm only 53 :-( GOOD LUCK GEL1 X

  • It was my understanding of Apixaban that, like Rivaroxaban and warfarin, its effects wear off over quite a short time span. I was on Rivaroxaban, a drug that has no antidote, missed a dose while I was in hospital, and within less than 24 hours I had a significant clotting incident. Admittedly my circumstances were very specific and I'm not saying that if you miss a dose something major will happen, but I don't believe that these newer drugs are completely irreversible, otherwise you wouldn't need to take the medication every day (or twice daily). I would ask your GP/consultant for quarterly (or more/less frequent) blood tests if you're worried that your medication isn't working. They won't be able to do an INR blood test, but I imagine that there will be other indicators if your blood work comes back with abnormal results.

  • I am so totally feeling same way.. I was 55 when all his started. Aortic thrombus which is usually fatal. Warfarin last three years and I have been to a hematologist which says warfarin for life. Feel awful all the time, hair falling ouf like crazy. I understand how u feel. I see this is from 2 yrs. ago so hope you have found a way to feel better

  • after getting hit by a car, I was comatose for 2 weeks then put on warfarin and hydrocortisone pills for adrenal defiency, well after 2 years and going to Loyola hospital, I was at a doctors visit and like that he told me to stop warfarin, just like that, nothin happened but if I don't take those hydrocortisone pills I get very sick and ill, been taking them for 3 years now, and if I forget I pay dearly and wind up hospitalized so for the warfarin it was just stop!


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