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warfarin

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Guest
Guest

I have just been on warfarin for 6 months for a left femoral dvt,during the prescribing phase no information was given to me,and I am shocked to find out myslef after having an episode were my vision went very weird with associated vomiting for 5 hours that warfarin is a neurotoxin and can in some cause brain damage.wouldnt you think someone would give me that information at the start.prior to the above episode i had experience short burst periods of dizzyness,and profound lack of clarity of thought. considering the seriousness of this drug wouldnt you think more information would be available to the taker of the drug other than the scant information on the drug information lealflets coming with the drug.I am profoundly angry as the lack of the more serious side effects to this drug not being given to me in order that i might make informed choices at the start.i have stopped the drug myself and informed my doctor of this.

1 like, 38 replies

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  • Guest
    Guest

    Posted

    I had no idea that Warfarin was a neuro-toxin, but since starting it 3 years ago as a result of a PE, I have experienced a profound loss of memory and mental dexterity, as well as gaining 3.5 stone. I was told this drug had no side effects, but it rules my life now because my INR is completely unstable, no matter how careful I am with my diet.

    Where did you get your information/ I would like to find out more.

  • bowman
    bowman

    Posted

    My husband, 77, was put on warfarin in June 2012. The side effects, denied by the clinic, are eye bleeds, dreadful mood swings and hair loss. And now swelling of the left ankle which might result in surgery!

    I worry that the mood swings are going to become worse and cause some kind of dementia. Up to taking the warfarin, and even now we do a lot of sports, archery, cycling, and car racing. We have been advised to 'not do anything to cause a bleed'. Mmm! be a couch potato according to the medics.

    He doesn't take any other medication but the INR results fluctuate badly, from 1.3 to 2.9. I looked up age re warfarin and the NHS says anyone over 65 should be very careful, and shouldn't take more than 4mg a day. He is on 7 and rising.

    Has anyone else had these symptoms as we are not believed.

    • christine98681
      christine98681 bowman

      Posted

      there is no fixed inr rate ive beenon it 12yrs im older than yor husband mine as been as high in dose as 10 this is a bad drug for side effects i must admit if you sneeze they put it down to the wafrin is a load of rubbish you can be ill but it dosent mean its the warfin sometimes it annoys me they blame the tablet instead fo getting to the bottom of what is wrong with you.

      christine 

  • arthur15
    arthur15

    Posted

    I was disturbed by the symptoms that the original writer has experienced, and which he / she attributes to Warfarin. I have experienced three strokes, one of which gave exactly the vision and vomiting symptoms just as he describes. I was not yet on Warfarin at that time. Could you have had a stroke - have you checked with your Doc?

    For interest, I had a heart attack, and later had a stroke each year for three years, and then was diagnosed with atrial fibrillation. I was put on Warfarin, and have now been without strokes for thee years.

    For me, the balance of risk equation says "Keep on taking it." I would sooner bleed a bit when cutting myself than fall over with another stroke.

    I was concerned to see that you have unilaterally decided to stop taking Warfarin. That's a very serious decision. Do see your Doctor, my friend. Many of us have to face up to pills to stay alive, and there are side effects. Often though, the side effect of not taking them (or worse still, stopping them) is Death. Try not to go there, my friend. Stay with us in the sunshine.

    • peter77227
      peter77227 arthur15

      Posted

      I read your advice to continue taking warfarin and thoroughly agree

      with your comments. Now 84 I have had between 5 or 6 TIAs which

      began at age 70 when a nocturnal bleed left only 30% vision in left eye.

      I was started on statins 40mg, asprin, duiretics,and dilators.

      The last stroke in the Spring had me pitching over to the left and

      double vision. The A & E on a Sunday did not have a senior

      Cardio Doctor on duty and the clot moved and the double vision

      cleared on it's own.

      I returned to hospital on the Monday and the Head Cardio Doctor gave me 120 mg of Simvastation immediately and a 24hr monitor and an 

      urgent ECG and head x-ray. There were several scars from previous

      strokes and many clots spots. I was fitted with a 7 day monitor which

      revealed attrial fibulation. I was given Bisoprolol 3.75 mg.for the latter and placed on Warfarin and Clopidogrel discontinued.

      I feel a great deal better now and can walk uphill to the top of

      my town without having to stop and get my breath. I no longer

      put off shopping or jobs around the home.

  • Tarun
    Tarun

    Posted

    Very sensible advice there from arthur. I am surprised that no information was given to you when you were first prescribed the drug. There is usually a yellow information pack with a booklet, INR record book and extra slips and small credit-card sized reminder to keep. The counselling would be done either by the doctor or pharmacist. It is not "neurotoxic" as such but can cause the obvious side effect of prolonged bleeding. Certainly in the presence of any neurological symptoms such as vision problems, headaches, vomiting or dizziness etc an INR should be taken ASAP. Infact if you have symptoms which are not mentioned in the leaflet then it's imperative you get checked out by a medical professional. Realistically there is only so much information that can be provided within the leaflet. Most people do not study the leaflets in their medicine packs, and adding more information will make it even less likely that people bother to read it. If we told you of every possible side effect, ranging from the most common to most rare, no-one would taken anything !

    Tarun (hospital pharmacist)

  • bowman
    bowman

    Posted

    Although I do agree with Tarun about getting checked PDQ, I totally disagree that we don't read the leaflets.

    5mg warfarin contains erythrocine. My husband is allergic to this so we have to check every ingredient in any pills. Symptoms..pain all over to the extent that when given it in hospital... even though they'd been told not to...he was in such a state he asked me to put a pillow over his head as he couldn't stand the pain any longer.

    The side effects he gets from the 3mg (all he is given) are not good and over the last couple of months he has complained of dizzy spells and memory problems. We are just told by nurse at GP surgery (Doesn't have a heamotologist to talk to!) that it can't possibly be the warfrin. Funny none of it happened until put on warfarin in June last year. He takes no other medication!!

    He is now frightened to take it, but also frightened not to....

    • marcos_lins
      marcos_lins bowman

      Posted

      Dear Bowman and colleagues

      Prescription of anticoagulants alternative to warfarin is increasing. Approval by FDA is recent (2-3 years, compared to 40 years experience with Warfarin). I've been on Xarelto (rivaroxanan) for 4 months (i had recurrent DVT and Pulmonary Embolism, suffer from moderate pain in joints and muscles all over the body) and back on Warfarin for a lifetime. Some doctors opt for new drugs because Warfarin resulting INR is affected by food and medicines. However monitoring and reversal of new drugs is risky and still unaccessible to the common patient. I believe that the latter should be prescribed only when strictly necessary. 

      Besides reading leaflets, patients are invited to research on medical websites whenever language is accessible (and it should be). Human body is so complex that in many clinical cases no medical consensus is possible to achieve. Actually doctors usually don't accept a second opinion supposedly because patient would be confused. The true is that they themselves are not willing to acknowledge scientific unknowns. They "should" appear assertive to patients.  I believe this is a worldwide prevailing systemic disfunction that requires counteraction by patients' engagement based on their first person experience. 

  • jenny94
    jenny94

    Posted

    I agree with Tarun, I had my first Pulmonary Embolis (PE) in 2007 caused by a deep vein thrombosis in my leg and although on warfarin for two years I had no side effects. Now following a massive saddle pulmonary embolism Feb 2013 I am back on warfarin for life and lucky to be alive. My swollen leg and ankle is down to post thrombosis problems not the warfarin. As a specialist nurse I have doled out warfarin to many patients and I count myself lucky that it is so well monitored.
  • bowman
    bowman

    Posted

    Hi jenny94. Unfortunately we don't think every 10 to 12 weeks is well monitored! And the effects aren't nice.

    He is having a minor op on his ankle on Tuesday, local anesthetic, and has been told not to take the warfarin since Friday.....what a difference,...no mood swings, no dizziness, not tired today, so bright it is like having a different person in the house.

    And thats after only two days!

    Not looking forward to him going back on it.

  • lisa219
    lisa219

    Posted

    Could anyone help me.? I am on warfarin for life and currently taking 28mg. my levels have never been

    stable, I currently see the nurse every week which she is amazed as her pensioner patients go once a

    month. I am 39. i just want to know if this is normal.

  • Tarun
    Tarun

    Posted

    That is probably one of the highest doses of warfarin I have seen. However please bear in mind that the dose is very variable between patients ! I have seen someone at the other extreme - taking 0.5mg/day ! Can I ask what is your target INR ? I'm sure you've probably been asked before but what is your diet like particularly regarding vitamin K intake ? Have you had any changes to other medicines you may be taking ? Sorry if it sounds as if I'm being nosy but I've not come across anyone taking 28mg of warfarin before !

    Tarun (hospital pharmacist)

  • lisa219
    lisa219

    Posted

    my target INR is 2.0 - 3.0. my INR this week was 1.0 and have been told to take fragmin with the warfarin this week. my diet has never changed and the only other medicines i have is my 2 inhalers which i have had since i was 16
  • bowman
    bowman

    Posted

    Due to my husband now having a test once a week, as levels never steady, we are considering getting a Coagucheck machine. Our GP is against it for some reason and refuses to give a prescription for the strips.

    Does anyone else out there use a home monitor?

    We are spending so much time working round the surgery time table it is becoming unbearable.

    His INR should be 2.5 but has fluctuated between 1.1 and 5.1 over the last 6 weeks. A friend who's INR went up to 4.8, instead of 2.5, was given a vitamin K injection, my husband wasn't and his INR took ages to go down.

    • Patricia_123
      Patricia_123 bowman

      Posted

      Hi I'm new on the site and just read your comments about your husband. I hope he is well i realise I am writing this a year after you posted. My target inr is 2.5. i started taking warfarin in january this year. I decided before i started taking warfarin that i wanted to self test. I self test once every other week. I have a blood test at the hospital at the clinic once every 3 months. I see the consultant, haematology once a year.this all works very well for me and my INR remains within range. The self test machine is a little expensive to buy. The first gp I saw in my practice was very reticent about providing the strips on prescription. Once I had seen my regular gp this was no longer a problem and the strips are now on my repeat prescription list. 
    • rob60599
      rob60599 Patricia_123

      Posted

      Hi Patricia, I just read your posting about self testing your INR. I've been on warfarin since the end of December 2013 due to a femeral bloodclot in my right leg which is the second one ive suffered. I have to go to regular INR tests at my local hospital which seem to vary 2 weeks, 4 weeks, 5 weeks etc. My INR has been quite constant for a while and I asked about self testing and my GP point blankly refused to put those strips on a prescription. How much do the coagucheck machines and strips cost?
    • Patricia_123
      Patricia_123 rob60599

      Posted

      Hi Rob, the machine cost approx £300, I can dug out invoice if you need exact amount. You do not need to pay the VAT if long term illness and on warfarin long term. I have APS often called sticky blood (had a stroke) or called Hughes Syndrome. I researched using the Hughes site as starting point when I was looking into getting the machine. I did not buy until I had guarantee on the strips! The haematologist and I discussed self testing he explained that in other countries like Germany the majority of people on Warfarin self test, we are a bit behind in the UK so you have to fight your corner. I spend a bit of time explaining impact on my life, you know, work, family, like holidays, also needing and having a right to manage my condition in a way that fits with my life!
    • jenny94
      jenny94 Patricia_123

      Posted

      Wow Patricia, I would like to do my own testing too! I get chest infections and then if on steriods and some antibiotics these increase my INR, so can be risky. However there is no incentive for GPs to support own INR testing even just by providing strips, this is because many (including mine) get paid more than they spend to have INR testing carried out in the GP practice.
    • bowman
      bowman Patricia_123

      Posted

      Hi. We did get a coagucheck machine. It took a while to get the strips from the GP but they gave in in the end.

      His INR still isn't stable and his side effects are not good, but as he doesn't have a heamotologist and the GP won't send him to one we are a bit stuck.

      I do a check for him once a week as the amount of warfarin changes all the time. If it goes above 2.1 his eyes bleed and he get a massive 'blood blister' on hisback...along with hair loss and dreadfull mood swings.

      Apart fom that he is fine!!!

      He has just built himself a single seat road car from scratch so still manages to do stuff.

    • marcos_lins
      marcos_lins jenny94

      Posted

      Dear Jenny

      Regular blood collecting for testing INR is less expensive than coagucheck lancets and strips. Besides that coagucheck requires some (little) expertize for operating. I had some operational failures (and wasted strips) because of insufficient amount of blood. Strips are unduly expensive, around £5 each. However, when the INR is not steady, interval between measurements should range from 1-3 days. Unbalanced haemostasis is indeed a very serious situation and public health systems should support patients self assessment. 

    • jenny94
      jenny94 marcos_lins

      Posted

      Dear Marcos,

      I am a trained nurse so this is ok for me, but the real cost for is having to take time unpaid off work (from the NHS), the travel, the parking etc all to do an INR that I could do at home. In addition when I have to take short term medications both known to thin the blood (prednisolone and an antibiotic for a chect infection) then in the evening 3 days before my next INR is due, I cough up blood and have a nose bleed, rather than worry that I should call the out of hours services (would end up being admitted which I hate) it would be good to check my INR at home.

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