Anybody else experiencing Warfarin misery ?

I started Warfarin last week and since iv'e been taking it my stomach has been 'very sore' despite taking Lansoprazole.

I feel more tired than normal of which I didn't think was possible because due to all my other ailments I struggle through my day if I dont have a nap or two.

The Warfarin has been prescribed along side of my taking Clopidogrel.

What with the tummy ache, tiredness and low mood I dont know what to do with myself.

I have left a message for the haematology clinic to ring me in the hope someone will get back to me so that I can discuss my issues.

The nurse to check my blood is not calling until Wednesday and I really dont wish to suffer like this until then.

Before being put on Warfarin I was taking aspirin of which was also aggravating my stomach even though it was gastro coated.

This is from a very miserable Jillymo. :-(

26 Replies

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  • Hi Jillmo,

    I have heard of bad stomach from Aspirin but never from Warfarin. If you at the same time take Lansopraxole the INR will probably rise so you know that if you stop the Lansoprazole one day.

    Hope you will feel better soon otherwise there is also LMW Heparin if Warfarin should not be the right drug for you.

    Tell your Specialist about it!

    Best wishes from Kerstin in Stockholm

  • Good morning Lure it's nice to hear from you.

    I take the lansoprazole a couple of hours before taking the warfarin I take it with my thyroid meds when I first get up.

    I dont have a specialist as such it was a haematology nurse I saw at the hospital I have left a message on their answer phone.

  • You are taking the Lanzapatole with your Thyroid meds??? Oh dear no wonder you are not gaining any benefit! It's absolutely essential that you take Thyroid meds on an empty stomach and at least 4 hours before that medication and any iron. You really should not take them with any medication. You will need to move the time you take your warfarin till the evening so you can move the stomached meds as far away from the Thyroid meds as possible. If it's easier, bring all other meds forward and providing you don't take anything at night before you go to bed, take the Thyroid meds then on their own but make sure it's at least a few hours since you last ate.

    I suspect some of your fatigue is because of the uptake of your Thyroid meds.

  • Did you also start the clopidogrel last week or were you already on it ? If you just started it then I'd say it's that rather than the warfarin that's making your tummy upset. Buscopan is good for settling windy runny tummies and you can now buy it over the counter.

    Are you on gluten? Cutting that out will help too I'm sure. With your Thyroid problems did they never test you for celiac? That might be an idea before you stop gluten.

    You will still be on a loading dose of the warfarin so I doubt it's that unless you have a very unusual reaction to it.

  • Hi,

    You have seen prof Hughes and prof D´Cruz lately. I think you should ask one of those gentlemen Doctors before a nurse when you start such an important drug?

    Kerstin

  • It was D'Cruz that suggested the warfarin.

  • Ok. That was a stupid answer from me!

    Kerstin

  • Bless you. Xx

  • I was already on the clopidogrel and aspirin the aspirin was stopped to introduce the warfarin.

    I am gluten free and have been for many years.

    It is not wind although I have had an upset bowel with the warfarin, what I am experiencing is an inflamed stomach a real rawness low down in the gut.

  • Hi, are you gluten free these days? Also perhaps adjusting to the new antiplatelet will take some time, and maybe it will also settled down as your system adjust, Warfarin and all. I will add that many give up gluten and do not realise that Levo thyroxine has gluten as one of the fillers! MaryF

  • Nice to see your back and without key board issues.

    I have been gluten free for many years or so I thought I was not aware thyroxine contains gluten.

    What I am experiencing with the warfarin is a very raw and sore stomach like it is inflamed.

    I am still waiting for the Haematology Dept to get back to me so that I can discuss this issue.

    I am very sensitive to some of the fillers used in some of the meds I remember when my plaquenil was changed to another brand I had similar problems.

  • Ha ha, currently no keyboard issues on a borrowed lap top, however I still have the naughty lap top with badly behaved keyboard and another new lap top which my husband ran over in the car complete with several telephones.... MaryF

  • ps: eltroxin liquid levo is lactose and gluten free but very expensive so the usual problem of GP prescribing such things. MaryF

  • As miserable as I feel you always make me smile.

    I am glad to see your not using your old keyboard it was like trying to read morse code.

    I had not heard of eltroxin liquid I shall put that forward to my endo for a bit of fun.......I have no chance of him prescribing it they simply dont do expensive.

    I shall not comment on your husband running over your new laptop and phones. :-)

  • You could annoy or amuse your Endocrinologist by asking him to supply NDT, it would get rid of any gluten issues and I suspect the added T3 would give you a boost. When I swapped to it my stomach issues improved almost over night. I then found lactose and soy were creating problems and cut them out which got rid of almost all of it. I find I have issues with certain generics which is obviously down to the fillets. My chemist is very good and keeps a note of the Ines that cause an issue so he does not give those to me. Sometimes it's just trial and error.

  • I am the same with many of the generics and their fillers.

    If you remember when plaquenil was changed for a generic I was in terrible trouble with my tum and rear end.

    The introduction of the warfarin is doing very much the same the nurse has told me it should settle down in a few days.......I do hope so.

    My endo wouldn't have a clue what NDT is I have no chance with him prescribing it he is desperate to get me off T3 I tell him Prof Hughes said I am to stay on it. He is always on about the NHS and it's expenditure and how much he has spent on me ! I saw red when he told me that as If it had come out of his pocket.

    I would love to try NDT and a different brand of T3 I am sure I would feel better on something else it is common sense the levothyroxine is not working for me.

    Since that awful hot spell I have felt ' very ill ' I have terrible trouble with overheating

    I shall be seeing my end on the 5th of next month so will raise my wanting to try NDT to him..........he's easily wound up and after many years of seeing him he still doesn't know how to take me.

    He is one of those that never answer's a direct question it is always dont think so, probably not, doubtful, he infuriates me so I go out of my way to antagonise him just for a bit of sport.

  • 🎁💩

  • He deserves a gift! He needs to study your samples... endlessly! Surely he must be missing something!

    Ok. On a serious note- two thoughts. I had trouble when I first started warfarin. No thyroid problem- so that aside the doc put me on in Prilosec. The prescription one - omneproxolone. Turns out I'm a little allergic to it- terrible diarrhea and nausea.

    Also- my gastro doc advises with titrations up on The plaquinil- I can't get the pip one Lynn recommends) - get really very sick titrating up. My gastro recommends old fashioned banana flavored liquid Gavinscon.

    I wonder if it has things in it you are allergic to?

    I fear my recommendations are far too generic for a thyroid patient.

  • I dont think my consultant would appreciate your gift put he has had gallons of 24hr urine samples in the past.

    The original plaquenil I could tolerate but when the company who produced it sold it to another I was given a generic. The generic was pure evil and gave me very sore stomach and bowel with constant sickness and diarrhoea.

    The consultant wouldn't accept it was the generic causing my problem so they sent me for bowel tests...........yes I had the camera where the sun does not shine.

    I managed to get my pharmacist to track down the new company now producing plaquenil and hey presto my stomach and bowel problem stopped.

    I now insist that a generic is not prescribed when it comes to my hydroxycloroquine.

    I have been taking lansoprazole for some time but I still suffered when put on warfarin...........although I am pleased to say it is a lot better now but i'm still a little sore in the tummy.

    I sometimes wonder if they are trying to cure us or kill us off.

  • I have not read any posts from Brits regarding probiotics. Cleveland clinic started me on aggressive dosage of bifidobacteris, lactobacilli and saccharomyces boulardii. I had been having lower G.I. tract issues, which I call brown streak syndrome, and probiotics put in immediate halt to that problem. I did have to raise my warfarin levels soon after, as my G.I. track had become much more efficient with nutrient absorption.

    I would not attempt this without a doctors supervision. And I do not know if probiotics have become a "thing" in UK medical circles. Here in the states it's just beginning to move from marginal to accepted medicine. But if bringing this up is an option with your doctor, I would certainly do so. The more I have read about the importance of the microbiom in the gut, the more encouraged I am that future knowledge will lead to better and cheaper treatments of common diseases.

  • GinaD I agree with you. I had posted a question about probiotics a little bit ago

  • I had gut problems when starting warfarin, was put on lansoprazole as a direct result - I stopped it as it wasn't actually helping anything, I am still convinced my problems were not actually down to excess stomach acid.

    I was advised (I think most people are) to take warfarin in the evening, but in fact shifting it to earlier in the day made a massive difference to the stomach/gut issues. For me it seems it needs to have a meal on top of it (not taken after dinner) and not taken with other meds and also not taken before lying down - taking it with other stuff before bed wasn't good...

    There is also the issue of the dyes in the different colour tablets, which some people react to. Doesn't matter which colour you take as long as you can make your correct dose, mostly I take pink 5mgs (5mg dose at the moment), which I requested not for convenience but because the blues and browns (3s and 1s) seemed to cause more irritation. You can also get (and I have) white 0.5mgs which have no dye in them, which is a useful test - but you may have to take a lot of tablets to make your dose. I think they all have gluten in the fillers, so one tablet might be better than many for that reason...

    I may take a lot of experimentation to find what works for you, and since you have to sort out dose and INR as well it all may take considerable time - took over a year before I was comfortable being on it and felt I had resolved the problems due to it (or identified other causes). For many here, warfarin is a life saver _and_ they feel much better on it, for me it is something I have to take to stay alive but it has never made me feel better (quite the opposite).

  • Hi Ray46,

    What does your Specialist say about it? Has he suggested LMW Heparin instead as you feel bad on Warfarin?

    So you do not know when the INR makes you feel well and when it makes you feel bad? What INR are you on? Are you Lupus Anticoagulant positive?

    Kerstin

  • I have just had a call from the haematology I had the nurse call this morning to take my bloods and they just rang with the results of which was 1.2.

    They have told me to stop the clopidogrel and increase the warfarin as from tomorrow.

    It is still very early days I was only put on warfarin last Wednesday up until that point I was on clopidogrel and aspirin.

    If my stomach cant tolerate the warfarin they are going to have to find something else more suitable for me.

    Yes I am lupus anticoagulant positive.

  • I have been taking lansoprazole for a long time now so I was surprised to find the warfarin had upset me.

    Haematology have just increased the dose because my INR was only 1.2 I am dreading the consequence of yet another tablet. :-(

    Many on here often say they feel better on warfarin but I would rather inject that way my poor old stomach wouldn't have to take the brunt of all these meds.

    As you rightly say the colouring and maybe gluten in them affect us probably more than others because of our weak immune systems.

    I do hope it makes me feel better I really have had enough of the way I feel I am struggling to cope and finding it hard to get through the day without having to lay down.

    It's so awful waking feeling c--- all day every day.

  • I am sorry this is such a struggle for you. I was switched to lmwh and I am really happy. I inject every twelve hours because my history is high for clots. I inject at 6am& 6pm. After getting familiar with the injections it's easy and you can eat whatever you want. Good luck with whatever decision is made, Cindy in NJ

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