Hi there,
I have to take warfarin for life. It is killing my mood and happiness and I wonder, does anyone have a similar experience? I am looking into trying Sinthrome instead as life on warfarin is a quality of life I have never known and want to give up ASAP. Because this isn't identified as one of the side-effects people can tend to dismiss what I say. But I am very self-aware and ordinarily very happy so know - it is the warfarin speaking.
Thank you. I welcome anything you have to say.
x 
You need to discuss this with whoever is managing your APS.
I never experienced this when i was on Warfarin, I'm now on Fragmin injections.
Dave
Thank you.
I am on Warfarin and I have never feeled depressed on Warfarin. My neurological symptoms disappeared and that made me feel better. I have heard that there are few side-effects of warfarin. It is only the the risk to have a bleed but there is antidots to it. It has been tried for so many years and I have read it is a drug that has a positive outcome on many patients with APS. But I I have heard that depression goes sometimes with APS.
Warfarin is recognized worldwide
.Best wishes from Kerstin in Stockholm
Thanks Kerstin. This is both helpful and kind. I am switching meds soon and looking forward to that. Take care and thanks once again. x
Hi there, sorry things are rough. I think you must have a detailed chat with whichever consultant is managing your Warfarin and perhaps the GP also. I have not heard of this as a side effect. Many people can have episodes of feeling very low just dealing with life alongside this disease plus of course the very obvious fatigue that comes along with it. Some people find adding in Plaquenil has helped them, terms of the fatigue which can drag people down at times. Also it is very important to regularly check your levels of D B and Iron as all these if low can cause a negative effect and
make you feel more down and tired. Also a Thyroid problem not picked up can also cause depression. I hope you have some support in your life at home to help you through this patch and discussing your Warfarin with your medical consultant is a good starting point. We can only really explain our own experiences, mirrored across this forum and give you suggestions for when you visit your clinic. Do tell them you feel awful. Let us know how you get on. MaryF
Thanks Mary. This is great. I will continue chatting to my GP and change my meds. Take care. x
Hi, my opinion is that its more likely to be down to Aps rather than the warfarin? I'm on warfarin but at times I struggle with depression....but I believe mine is down to Aps.....others may have side effects from warfarin? We are all different....but this is what I think in my opinion ( I am not medical )
I have been through a lot emotionally recently which won't help anyway so quite weak at times.
As others have said also check with your gp what they think plus your levels with iron, thyroid etc.
Most of us are going through what you are feeling, you are not alone x
Hi
I was very interested to read your post, it seems as though it is a chicken and egg situation with the warfarin and APS. I think the advice from others is spot on. It makes you feel quite isolated when you know that something has changed, but no-one seems to be listening. I work in mental health and regularly see people whose mood has been affected by medication, given for a physical health problem.
.I too have felt depressed since starting warfarin for life 17 months ago. I've noticed that diet affects my mood, if I have chocolate or sugary food my mood dips, also if my sleep is poor, if I don't try gentle exercise etc, so yes you need to look at your lifestyle. However personally I have to say that there has been a massive difference for me since starting warfarin. I know its doing what it needs to do, to prevent clotting but I have headaches, double vision, memory loss, poor co-ordination, the list goes on and on and of course these symptoms are going to affect my mood. I can honestly say that since I started taking warfarin I have felt ill almost every day, but we are all different. I was told recently that I must have a hypersensitivity to warfarin. Thankfully after being told endlessly by my GP,practice nurse and haemotologist that warfarin cannot cause some of the symptoms I have, I am going to see an APS specialist in June and I have a huge list of questions!!!!!. So I would echo everything that has been advised by the others who have replied and say you need to get as much advice as possible, listen to your body, be aware of changes,(cause and effect ) and ask to be referred to a specialist. Good luck x
Hi, You are saying you have "doublevision" poor co-ordination and still other neurological symtoms and I at once think that you perhaps are not well anticoagulted with warfarin.
Some of us need a higher INR and perhaps your hematologist has put you on a too low therapeutic range or you visit the coagulation clinic not so often and then you do not know that your INR is too low. My doublevision was gone at once after warfarin. I now have started to selftest and have all the antibodies and I know how important it is to control your INR and to be in target with this illness.
Best wishes from Kerstin in Stockholm
Hi thanks Kerstin for your reply, I see my Practice nurse every month, sometimes every 3 weeks without fail for my INR checks,my target range is 2.5 and it has been stable for a while now . I am convinced that warfarin is responsible for my problems, but have felt very let down by professionals telling me that I "can't" have the symptoms I describe, as there is no evidence that warfarin is the causal factor.. I have pushed hard to be referred to a specialist in APS and am looking forward to my appointment in June. x
Hi Kyrsty
I agree with Kerstin it sounds like your are not adequately anticoagulated and you should discuss the possibility of raising your target from 2.5 until you find a level that reduces your symptoms. 2.5 is quite low for people with APS. I would have felt very ill if my INR was only 2.5, when I was on Warfarin. I'm now on Fragmin injections and feel much better.
Dave
hello Dave,i hope you don't mind me asking but how long was you on warfarin before you changed to fragmin??i had daily fragmin injections for 18mths then had to change to warfarin with inr range of 3.5-4.5.have been unstable since jan,after being on warfarin now for over 4years,and am seriously considering going back to fragmin for a while,why did you go back to fragmin,if you don't mind me asking?
I was on Warfarin from 2002 to 2009 and then I started to get a lot of my original symptoms returning. I went to see Prof Hughes and he put me back on Fragmin and I would never willingly return to Warfarin.
Sorry you are suffering from depression awful isn't it you really need to speak with your Doctor as soon as you can.
I am not sure if it is the Warfarin but in my case I am sure it was Hughes syndrome affecting my brain, like the fog etc. I found it really hard to speak to my Gp about it, despite being in tears on many appointments he hadn't guessed. I am now on antidepressants and I feel totally different.
Please see your Doctor today
Thanks Daisy and thank you all. I am really grateful for all of your posts. I am in an open dialogue with my GP.
With love. x
Hi: I started Warfarin after a stroke in March and I have had a hard time adjusting to the testing, diet, etc. I have to practice accepting the fact that my life has changed as far as having APS--being diagnosed post stroke and that absolutely loving dark green veggies, I can no longer have the diet I'm used to. I'm trying different vegetables and learning to like them. I found a coumadin clinic near me that makes testing and adjusting meds easier. I don't like taking warfarin, plaquenil and Lipitor every day, but they're keeping healthier. I'm sorry you're experiencing depression and low mood. Your doctor may discover it has something to do with your condiiton or it could just be a matter of adjusting and accepting taking the drug. I don't know anything about any alternative meds but I'm so grateful to this site and I'm sure I'll learn more and get the support I need. Stay strong.
As many times as I hype this book the publisher should be paying me an ad fee! "In the Kingdom of the Sick" is a wonderful book that delineates the very personal, and UN-shareable changes we go through when we receive a chronic, for-life diagnosis. It's as though the author picks up your hand through the pages of the book and says, " I understand." And the book gave me a clinical, objective explanation as to why my diagnosis made me feel so isolated and judged,( though actually, I now know it was me judging myself.).
It might me the warfarin, or it might be the shock of coming to terms with a chronic, life altering illness. Or a bit of both.
Do talk with your GP. And I recommend giving that book a look.
Thank you all so much! Very helpful! x
Hi. My husband has also been put on warfarin for life. The side effects are horrible. One of them being dreadful mood swing and bad moods.
The GP just says it can't possibly be the warfarin and it's got to be what ever else he is taking...but as he isn't taking anything else.....!
I sent an email to the 'yellow book scheme' (nothing to do with your warfarin yellow book) which lets us, the patient, tell the powers that be what side effects we are getting. Whether it does any good or if any one even reads them I don't know.
Hi Tipi, I am sorry to hear this and yet glad you are able to express it somewhere, someone may hear. What I have come to realise is that warfarin un-earths me. In saying that I literally mean, when the dose is too high, electrically it un-earths me and my body chemistry rages. I have to get my feet on the earth and be as close to nature as possible. Best of wishes in all. Love, D x
hi tipi
I know it has been 3 years but I have some personal feedback that I think agrees with your idea. I do not have Hughes syndrome as far as am aware.
I am on rivaroxiban for DVT/PE and have just started the change over to Warfarin. I am doing this because it is a tried and tested drug, about which there should be very few unknowns. I took my first dose yesterday evening and this morning I am ferocious! Extreme intolerance of my daughter and my dog, feeling an out of control aggression, which has sent my daughter scurrying to her room.
I think it is not possible to deny that this may be a reaction to the drug as when drugs are tested the focus is on the effects they want. In a drug as old as Warfarin, I can't imagine that the reporting standards were anything like as thorough as they are now. If it were subjected to further research you can bet your bottom dollar that issues would be observed that either were not monitored or were considered irrelevant.
So, I feel it is almost certain that my sudden bout of aggressive behaviour has been caused by the Warfarin. Whether this continues or not will be a big factor as to whether I do make the switch at the moment.
My husband has now been put on Apixaban.
The side effects of the warfarin were horrendous. With the moods (really nasty), blood blisters, bleeding eyes, joint pain, swollen ankles etc.
It took us 3 years to get past the GP and see a heamatologist, and she immediately put him on Riveroxiban. Unfortunately he couldn't take that either...so Apixaban was tried.
He is still on Apixaban and the side effects are few and far between.
I wrote to the Yellow Book scheme when he was having all the problems, and the last pack of warfarin he was given had aggression in the list of side effects!
Do please be careful. It is desperately difficult to keep the level correct, and we even bought a Coaguchek machine to do the blood tests at home as his INR would often go through the roof.
Warfarin is usually given as it is so cheap to produce...not because it is particularly the best for you.
Hi tipi
thanks for your reply. Interesting that aggression is now listed as a side-effect! I can't see it on the information sheet but my daughter says she doesn't want to have to live with that level of anger. I seem to be alright today. I have to say I am a little concerned that if I make the switch I will then be stuck on it.
I found it difficult to get any information on line abut it and now I am not sure it is going to fit in with my future lifestyle plans. I am planing a long trip in my camper van in europe with increased levels of activity/mountain walking as I need to get a lot of weight off. I do want to be able to have a glass of wine without being concerned too
I think I may have to wait until I am more stable before attempting my plans.
Thanks for your message, very helpful.
Sue_b
Hi Sue,
You are now on a 3 year old question and none of you two (tipi also) have HS/APS. You must have landed on the wrong site now.
Best wishes from Kerstin in Stockholm
Hi, You have said your husband is selftesting. You have to do it at least twice a week to be able to follow the INR changes. Make notes of the K-vitamin intake. I take more broccoli if my INR is a bit high. I almost never change my tabletintake. CONSTANCY in the things you put in your mouth.
I do not think it is the Warfarin that makes you husband have low mood. There are very few sideeffects with Warfarin. It is the illness and the situation. Most of us need an INR around 3.0 to avoid the horrible symptoms.
Hope he has a good APS-doctor that understands his situation and that he prpobably only has to have a higher INR. Perhaps he needs something more than Warfarin. I had very high bloodpressure in the beginning. That goes with APS also
Best wishes
Hi Lure2. Unfortunately if his INR goes above 2 then his eyes bleed, the mood swings get worse, a large 'blood blister' comes up in the middle of his back and his hair falls out....as he doesn't take any other medication, (his blood pressure is fine) and the symptoms only started when he started the warfarin the only conclusion is the warfarin is causing it. Our GP was only doing the INR test about every 6 to 10 weeks, which is why we bought our own machine. It doesn't matter what he eats or doesn't eat, the INR goes up and down all the time.
Hi, I also have been on warfarin for over 10 years now and I am tired all the time, find it hard to sleep (can go days without sleeping till I crash from exhaustion). Just the thought of getting up and doing everyday things is tiring and yet I used to have to much energy!! I used to be a gymnast and have awards for swimming but you would never think that now.I hope this lets you know that what you are feeling you are not on your own.
Hi I am on Warfarin for life. I started 6 years ago and I now suffer from bad depression. I am convinced its the Warfarin. I don't sleep properly and often I cant get to sleep at all. I have also been told that "it cant be the warfarin" but I am very active, run a business, exercise a lot and yet have terrible bouts of depression. When I wake up in the morning, I really have to fight to get positive again. Its not a good way to feel. I have no idea what to do or what the answer is. I understand all the comments on here!!
Hi,
Warfarin totally destroyed my quality of life so I switched to Acenocourmarol which is the same drug made by a different manufacturer and was myself again with one month. You don't have to have your mental health and emotional well being destroyed by warfarin. Ask your GP if you can try this alternative. Throughout Europe it is preferred over warfarin and requires the same INR checks.
I hope this helps.
With so much kindness to you.
Dawnie
Hi Dawnie, can you please elaborate on how this destroyed your life? What did you experience?
Hi there,
It travelled through every system in my body and ship wrecked me. Very difficult to put into words but basically, it started to break my body down and I had little interest in living a long life as my quality of life was so awful. The biggest thing was it really messed with my mental health and within 3 weeks of switching to acenocoumeral I was fine. My old friend John could feel in my energy field that something was wrong and this may sound silly but we do have energy field and mine was spewing sadness caused by the drug. Acenocoumeral does the exact same thing as warfarin so I would say definitely, give it a go!
Doctors are not attuned to this. When I had my second clots I became suicidal in response to the loading doe of warfarin and knew I had to get to the beach. I lay on the sand in my bikini with all parts of my spine nestled into the sand and the excess positive charge caused by warfarin was earthed and I was then fine. I said this to my doctor and he looked at me like I was a bit crazy but medicine and science don't know everything yet and many thing will be understood long after I am dead and generations on from now. Listen to your body and trust yourself.
I hope this helps. x
Hi ZoraTastic,
May I ask why did you take Warfarin? We have too thick blood here (Hughes Syndrome).
Could it not been sadness and anxiety from the clots you had had. Hope you have got a really good anticoagulation to avoid no more clots and also a Doctor who understands Hughes Syndrome.
Best wishes from Kerstin in Stockholm
Hi there,
I had 2 unexplained episodes of pulmonary emboli in 2013 and took warfarin until July 2016. It was on-going hell and a steady decline quality of life until I realised it was warfarin that was causing it so I switched to aceoncoumarol and was immediately fine.
I hope this helps. I am a member of you now twice as I am FunkyPixie but could not log in as her and wanted to reply to the person who is also experiencing distress on warfarin. I hope this helps everyone and I am glad to say medicine could not identify any pathology so I remain unexplained.
With kindness,
Dawnie xXx
Could they not explain your Pulmony emboli? Did it have to do with Hughes Syndrome and are you diagnosed today? Did you also have 1 or 3 positive antibodies in 2013? Do you have a Doctor specialized in our autoimmun illness? Is he positive to your drug?
It is very very difficult to be on Warfarin but it helps with our illness.
What INR do you have with Acenocoumeral today? Very interested to hear!
Kerstin
Hi,
Thankfully I do not have APS. I saw Professor Bruce in Manchester and had a zillion gets. All were negative.
I have just stopped taking Acenocoumeral and am now drug free. My INR was around 2.4 on the drug and it is the same drug as warfarin but made by a different company. The rest of Western Europe uses it way more than Warfarin.
I hope this helps. xx
I am glad that you do not have Hughes Syndrome.
I thank you very much for telling us this and I wish you wellness in the future!
Kerstin in Stockholm
Hi, I too have felt depressed and often have anxiety while taking Warfarin (since October). I guess, to sum it up, I don't feel like my old self. Have you discovered anything or talked to any doctors since you wrote this post?
Hi,
That can also depend on why you are taking Warfarin. Is it for too thick blood (Hughes Syndrome) or something else? Here we have that illness all of us.
The anxiety can have to do with the situation and the illness in itself. I have not heard of anyone beeing especially depressed by Warfarin.
Best wishes from Kerstin in Stockholm
Hi there. I have recently been put on warfarin due to abnormal clotting which they can't trace the cause off. I've had ptsd for over 20 years now due to old war experiences and am often depressed which I take valium on a daily basis for. Since been on warfarin my depression has been very bad and the tiredness and stiff joints are bad. So yes I definitely feel that warfarin effects my depression in a severe way. Don't know what to do though.
Hi,
I see you have joined our site today.
If you test your blood for our illness (you say you have abnormal clotting) and get a diagnose we can answer your question. Our illness, Hughes Syndrome/Antiphospholipidsyndrome, is about too thick blood that makes the blood clot a lot!
I have been on Warfarin for 5 years and it has helped so much to thin my very thick blood so I feel much better with Warfarin than without it.
War experiences in itself could be the cause of your depression. There are other drugs than Valium for depression. I have learnt that Valium if for anxiety and not depression. Hope you can talk with a Doctor who is ready to listen!
Hope you will feel better soon! Good Luck!
Best wishes from Kerstin in Stockholm
Sorry, can't say I've experienced any change in mood due to warfarin.
Hi Monk123,
I wonder if you have got APS like we all have here. It is therefor we take Warfarin some of us (like me). If you do have Antiphospholipidsyndrom/Hughes, do you also have depression?
As the Warfarin has helped me so much I feel much better but I have never been depressed because of my illness and absolutely not from Warfarin.
By the way you have now answered on a 4 year old question.
Best wishes to you
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