In my early 40's I was prescribed Warfarin after DVT thrombosis in leg and two PE's circa 2004. Had what I would call accepted side effects, feeling cold, easily bruised had to change my diet slightly as grapefruit juice, cranberries, leafy greens were apparently not good whilst taking Warfarin.
Around 2014 I was put on Rivaroxaban which was apparently a better drug than Warfarin, required no regular blood tests or hospital visits, unfortunately this change coincided with various changes in my physical and mental health. I started to have waves of lightheadedness, inability to concentrate, 'feeling out of body'.
I have seen several GP's, was referred to Endocrinologist circa 2018, was found to have sleep apnea partly caused by being overweight, but nothing conclusive found after many blood tests, MRI and Neurological tests. CPAP machine was prescribed for sleep issues but my symptoms have slowly worsened.
I currently experience hangover type symptoms every day, I feel unwell constantly which has caused me to become very depressed, I panic over the slightest everyday problems, am anxious about leaving the house and being in public.
I was a very outgoing person, generally optimistic, a lively working musician and my life has almost flipped upside down. I struggle to survive week by week, I push myself to exercise or walk most days and try to drop weight. I really would like to know if any/all of the aforementioned symptoms have been experienced by those on Rivaroxaban?
I have been suffering for around 8 years of feeling unwell, uncertain and anxious and I am turning my sights onto Rivaroxaban and any issues people have with it.
I am trying to rekindle investigations with Endocrinologist and suggest Rivaroxaban as a possible cause but the NHS is backlogged and I could be waiting years to see someone.
Thanks for reading this... any help/advice is appreciated 😊❤️
I don't think your symptoms could be due to rivaroxaban, but it might be worth asking whoever prescribed it to you. When I was first prescribed it in 2017, the nurse told me that in recent years they had got a lot better at knowing who wouldn't suit it, and who it would be perfect for. You might be better off on apixiban, or another of the newer anticoagulants. Meanwhile, hang in there - if week by week is too long, make it day by day, or even hour by hour!
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Thank you for taking time to reply 😊 I have a feeling that my issues are related to being overweight and possibly a pituitary issue that flagged up in an MRI back in 2019.
I wanted to put the word out to see if anyone has experienced similar issue to myself on Rivaroxaban.
In truth all of us are different, our situation, our outlook on life, genetics, physiology and so forth, it is incredibly difficult to assess what is going on with individual health and effects of medication but it helps to share our feelings and experiences.
Hi Paul,I requested Rivaroxoban 7 years ago due to the many restrictions and difficulties when taking Warfarin.I new at the time that there was no clotting therapy if I should have a major bleed . Feeling tired has always been the downside of taking Rivaroxoban but thought it was better than Warfarin until I had a catastrophic bleed caused by a relatively simple internal procedure,ie Colonoscopy. NON malignant polyp removed and home the same day.Unfortunately polyp removal had exposed 2 veins inside the colon which resulted in these veins to rupture.6 days after the initial procedure I was admitted to I T U with major blood loss.So please be aware of a major pitfall when taking Rivaroxoban.
Thanks for your advice, I hope you manage to overcome the issues you are having with Rivaroxaban. I will ask about moving back to Warfarin for a trial period.
How long before tgr colonoscopy , was Thr bridging ( days you stopped the aRivaroxaban before colonoscopy ? I had a small Cancer cell tumour Mohs surgery ( wait while microscope d) removal then a plastic surgery on the hole under the eye. . I had to stop Rivaroxaban 5 days before , . Still bled They said from injections used in surgery. I suspect still from Rivaroxaban 20 mg even 5 days before .
Stopped Rivaroxaban 4 days before procedure and commenced the following day.Colonoscopy is relatively safe its just in this instance it was the removal of quite a large polyp that exposed 2 veins inside the colon.Which in turn ruptured and medics were unsure as to how to stem the bleed.Not sure now if I should continue with Rivaroxoban or request alternative therapy.This episode really does highlight the problems with Rivaroxoban and the consequences that can occur if no clotting agent is forthcoming.
Hi there. Yes, I experienced exactly the same symptoms on Rivaroxaban, very frightening and life changing. At its worse, I couldn't feel my feet on the ground and I felt so unwell. I have a few suggestions which might help. Firstly, perhaps ask for a referral to an haematologist rather than an endocrinologist.
Secondly, consider changing your anticoagulant, you might tolerate Apixaban better but it does work in exactly the same way as Rivaroxaban so you might have problems with that as well. There is a third medication called Dabigatran, which I am now taking which acts on a different part of the clotting process. This isn't usually prescribed as it is more expensive and it doesn't suit everyone as it is a very acid medication but if you take it with food and plenty of water, and don't generally have gastric problems, you might be OK. If you do change medication you probably won't see an immediate improvement so give any new ones a good trial. Unfortunately I found the effects of Rivaroxaban to be long lasting.
Thirdly, consider asking for a referral to a respiratory physiotherapist. When we get lung issues, or indeed trauma like a medical episode, we change our breathing pattern to compensate - typically breathing from the chest and faster. When the event is over, unfortunately our brains might have 'learnt' the new bad way of breathing which continues. This can cause hyperventilation syndrome which also causes a lot of the symptoms you describe like anxiety, light-headedness, and worsening sleep apnoea. The physiotherapist would be able to retrain you to breathe efficiently again.
And finally, you should get blood tests every 6 months on these meds to check that your liver and kidneys are functioning OK. Ask to have your vitamin D, folic acid b12 and iron tested as anecdotally anticoagulants might cause deficiencies with these and low levels also cause the symptoms you describe.
Most people are fine taking anticoagulants but for a significant minority there are debilitating side effects. Personally, I think they are vile and you have my heart-frlt sympathy! I hope you can find a solution that at least makes life tolerable.
Thanks for your reply and advice, I am waiting to see a specialist which may be months and months due to NHS backlog with Covid. Whoever I see, be it Endocrinology or otherwise I will push to see my AntiCo clinic and discuss my symptoms. On a previous meeting I did mention what I thought were possible side effects of Rivaroxaban but it was brushed aside as, 'unlikely'.
My symptoms have been with me for a few years now, and more recently feel that it is slowly robbing me of my life. I find it intriguing how one can almost get used to being unwell and accept it, which is not what I want, I must keep fighting.
I certainly sympathise with you about how you are feeling and did wonder whether similar symptoms I have experienced are as a result of taking Xarelto. I too feel very ill in the mornings and my anxiety has definitely increased but it has been difficult to pin it down to just being the result of the medication as so much has happened to us over the last three years in particular. I am pretty sure Covid has a place in there somewhere as well as the vaccines so I am unsure whether the awful unwellness I feel can be attributed to just Xarelto alone. The only thing I have to go on is that when I was first put on Xarelto in 2016 I had to change how I took my 20mg maintenance dose to two lots of 10mgs as it was causing me sleeplessness and sometimes nightmares when I took it in one dose. At that time they just had me on it for 6 months and then I came off it. I can honestly say that I didn’t start feeling well again until I was off the stuff. However, after the PE last year, they told me I had to be on it permanently and again I am feeling awful every day. I am at the point of asking to try Apixaban to see if it improves how I feel as I have definitely felt that my kidneys and liver may not be functioning at 100% and that could definitely cause hang-over like symptoms so I would suggest that this might be the best first step.
I do hope that you find a better solution soon as well and who knows, a simple change of medication might just do it. Worth a try in my opinion. Good luck.
Thank you for the kind words, I will keep pushing to find some answers.
I must say that my symptoms are very similar to when I used to take beta blockers for high BP. Occasionally the brand of tablets would change at the pharmacy and I would feel lightheaded, slightly sick and what I, 'call off centre'.
The symptoms I have are not what I would call major or debilitating just there, all the time. Seems to be worse in mornings and in evenings, which leads me to think about blood-sugar, pre diabetes.
In 2019 all blood tests were regarded as fine with liver, kidney function and the tests made for diabetes. In one way it was a relief, in other ways increased my frustration at what it is I am suffering with.
It's around 8 years now with the waves of discombobulation that come and go, I am withdrawn, I panic when making appointments to see friends and am inclines to stay at home most of the time, it's the opposite of what I once was ... an loud, joyous, active touring Rock musician 😔
I suspect that your mood suggests that the whole thing is a bit more debilitating than you think. When what you are able to do and be changes so completely, the depression which comes from that loss creeps up on you gradually. If you are anything like me, you will have tried to keep going as you were as much as possible but after a protracted period of time it takes it’s toll especially when you feel that it has robbed you of your true personality.
A change of medication may well make a significant difference but do you really want to be tied down to Warfarin with its constant testing? After all it is still rat poison at the end of the day! It may be worth trying a different anticoagulant first before you resort to Warfarin like another reply suggested.
You are right on two counts, I sometimes underplay the affect of feeling unwell every day of my life although I do acknowledge the anxiety and depression that it has caused.
My partner pushes me to work through it, to exercise daily, despite hating that I can see why she does so. It's a sink or swim situation, and I can't afford to sink. I'm self employed musician (not a good combination at the best of times) and must fight in order to live,
You are right about Warfarin, although it was always pushed as a reliable antidote to blood clots until Rivaroxaban a drug requiring no regular interaction with hospital was introduced thereby cutting costs in NHS AntiCo clinics.
It's a bad time of year to get any action but I will endeavour to push for Endocrinology and also to see someone at my AntiCo Clinic.
I do hope your situation improves for you. Unfortunately people who push you to do ‘what is good for you’ sometimes don’t realise that it can appear as though they are minimising what you are feeling. Sometimes we just need someone to say to us that they understand that we feel like shit. I have found my mental state improves with Mindfulness/meditation of any kind really and reminding myself that I am grateful for a lot despite my difficulties. Sounds trite I know but sometimes we just need to look outwards rather than inwards. I would have thought that music could help you rise above your darker feelings. I live in France and just a drive out in the beautiful countryside listening (and singing badly) to music raises my mood, but I still have to remind myself to do it sometimes. CBT suggests that we need to look at what lifts our spirits and do more of that and less of that which lowers our mood. I know that when we are tied to making a living this can be difficult but sometimes we can tweak what we do professionally to create less frustration. Bon courage as they say here!
My diet is fairly consistent having lots of otherwise 'banned' foods ie broccoli, spinach, chickpeas, blue cheese etc (vitamin k) - often 2-3 per daySo it was better to dose this diet (fairly high level of warfarin)
than stopping eating the above (banned) items in favour of a smaller dose. (diet the dose)
As a vegetarian all of the banned items are pretty much part of my daily diet
I have been on Rivaroxaban for over 4 years none of those symptoms have surfaced there are alternatives apixaban etc I wonder if you could try them in order to rule out the Rivaroxaban maybe the condition that lead you to have to take the Rivaroxaban lead to the depression
Hi. Have you had your blood pressure checked? Have you had full blood tests done including Calcium and vitamin D and vitamin B levels? Also parathyroid and thyroid blood levels checked?
Being overweight I am aware of blood pressure issues, I exercise most days and have a BP machine myself. I am on what I call a, 'lightweight' BP tablet Indapemide which is basically a diuretic from what I can tell.
I have had many blood tests in the past, was seeing Endocrinologist until late 2019 when I had Prostate Cancer diagnosis which has now been addressed with surgery. Unfortunately the pandemic stopped all investigations into the long term issues I have been feeling so I have recently been pushing to reopen that line of enquiry with GP requesting to see a specialist at the hospital.
Regretfully I didn't make a note of everything tested in my blood and my online medical record doesn't have any information about that. I do recall some thyroid, diabetes, testosterone, vit D and iron were a few of the things screened, but more than that I haven't a record of.
I will be sure to make detailed notes in future should I be able to actually see a specialist again. The NHS is so badly stretched I think some appointments are running a year behind schedule.
Am aware that I need to drop about 3 stone in order to rule out obesity and all the issues related to storing oestrogen and blood sugar spikes. I struggle incredibly with that despite trying to address what I eat and exercise most days.
My gut feeling is that I do have blood sugar issues, possibly a pituitary related issue too, and, I guess the inevitable ageing process and drop in testosterone are part of the problem.
Interesting. Warfarin 2008 Rivoraxaban since 2014. Similar symptoms to you but never correlated them to change in anticoagulants. Nothing to add but am definitely interested
I understand Rivaroxyban is the most commonly given anticoagulant but it gave me appalling diarrhoea so then I was put on Apixaban - must admit I stopped taking it when the flecainide I was on prevented episodes but since the latest make of flecainide hasn’t worked as well I have returned to taking it again. We are all different and perhaps eventually that will be recognised! Good luck in finding what works for you!
Apparently according to my own recent research into why I was having awful side effects from Xarelto (Riveroxiban) including extreme diarrhoea, it contains lactose meaning that anyone with any intolerance to lactose as I have, may get stomach upset. Apparently some of the other similar anticoagulants do not contain lactose so trying a different one may just help the problem.
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