Back in 2015, I started working full time again nearly five years after my stroke. After my diagnosis of having Antiphospholipid Sydrome, I was put on Warfarin for life. It was keeping me stroke and blood clot free but did result in one serious bleeding incident when my blood went far, far too thin. Attending blood tests every two weeks is a pain when you are working and travel with work. I even bought my own blood test machine which helped but is only supported in some parts of the UK,
In 2017 I was moved onto Rivaroxaban and just one tablet a day with no blood tests - it had just completed trials. It's a much more convenient medication and there have not been any bleeding incidents.I can't yet say if it is a wonder-drug because some people have no strokes for decades while on Warfarin and Rivaroxaban is still fairly new. Time will tell.
If anyone else is working, contemplating work and having regular blood tests with Warfarin, consider this. It may not be applicable for all conditions but is much more employment-friendly.
I have just been (very reluctantly) put on warfarin following a BRAO. I have lupus SLE and APS. I am too young to try one of the newer drugs apparently as not yet trialled on younger people. Have spent hours on end in the hospital this week for blood tests and am devastated that I have been strongly advised against riding horses while on warfarin.
Meeting with antocoagulation clinic week after next and very much hoping am alternative may present itself
I did have one life-threatening issue with Warfarin where I was literally pee-ing 90% blood after my INR (the measure of how long it takes for your blood to clot compared to normal) had gone above 8. In the 7 years I had been on it, that was my only real problem apart from the inconvenience of the blood tests. It did keep me Stroke and Embolism free which I’m grateful for.
I’m still one of the lucky few to be on Rivaroxaban, I believe - a 2022 medical trial showed that for some stroke survivors, it was no better than Aspirin at preventing strokes, so it has fallen out of favour.
Sorry to hear about the horse-riding aspect. Hobbies after stroke are important - I’m still trying to renovate my ageing Land Rover with only one good hand!
Thanks so much for your reply and glad you’re now doing well. Good luck with the Land Rover! I’m sure it will be ready for the better weather
Great to hear others’ experiences, and will bring all this up at anticoagulant clinic and with haematology when I get an appointment.
Hoping is stabilises sooner rather than later. Do you member how long it took for your INR to even out? I’m at 2.8 today so am going down to 3mg tonight and bloods again tomorrow
Wanted to update, my warfarin seems to be stabilising, good results this week.
BUT some discrepanvy with what you’ve said about rivaroxaban - saw my rheumatologist this week - he was actually late to my appointment and so his colleague started it with me - he said there may be a chance of me changing from warfarin onto Rivox. But then when my consultant arrived and I asked again, he said absolutely not with APLS.
What do you think?? Should I maybe still be pushing this? (Must say my faith in my rheumatologist is at an all time low and I have requested a transfer so all my care can be in one place and with one NHS Trust)
I am commenting on this as I am interested to learn about treatments and trails and tribulations of stroke survivors. As advocate and carer for my Mum who is a stroke survivor I am pretty much responsible to taking care of her care needs and for keeping an eye on her medications.
Your note about Warfarin an Rivaroxaban rings bells. Mum was given Aspirin as her blood thinner and I have heard other patients taking Warfarin during inpatient visits. From this it seems either Warfarin or Aspirin are the current blood thinners. It is going to be cost based and so the cheapest option (that works) will be used by the NHS. In exceptional cases they may prescribe other drugs e.g. Rivaroxaban but I cannot say for sure.
Our views are long term use of any drug cannot be good and we try to come off drugs asap. Just on the note of blood thinners causing problems, Mum also had problems with Asprin (after 6 years use as a post-stroke blood thinner). This was in part due to a buddy drug PPI (proton pump inhibitor) not being prescribed at the time. It is too late now as Mum ended up in hospital due to internal bleeding and use of Asprin was stopped immediately on admission to A&E. She is no longer on any blood thinners and we are trying to repair the damage done by long term use of Asprin (without buddy drug PPI). This is just our experience. Many, possibly most patients happily take Warfarin and Asprin without any problems.
I don’t think it is unreasonable for you to ask for a different drug especially since alternatives are available. You might want to talk to your GP about this. If the consultant is flat refusing, you are entitled to know why and I would suggest you ask, especially given the stand-in who started the consultation said there was a chance. I have found that consultants sometimes override junior doctors just to show who’s boss i.e. they pull rank rather than support/encourage juniors.
I don’t know the details of why you need the blood thinner, but the “humble” asprin may be an option for you instead of Warfarin.
Just to clarify, aspirin is an anti-platelet med and warfarin is an anticoagulant. They are slightly different in what they do. Many stroke survivors get this muddled but it is worth pointing out for the sake of being informed about the difference. Anti-platelet stops the blood cells from sticking together and anticoagulants slow it down before it has the chance to form clots.
Addendum; blood does not actually thin, I ought to clarify as some people think their blood gets thinner on these meds.
Thank you for your comment and so sorry to hear about your Mum. You must be an angel to her.
every case is different and the cause of the stroke may well form part of the treatment.
I have been on low dose aspirin since my mid twenties when I was diagnosed with Lupus SLE and antiphospholipid syndrome. (APS) this makes my blood prone to clots, hence aspirin, which has worked well, without side effects, until my eye stroke (BRAO). The stroke clinic changed this to Clopidogrel and added statins, despite no high cholesterol.
I am 47, I am otherwise fit and well, the correct weight, no high blood pressure, no high cholesterol, good healthy diet and lifestyle etc.
So they are working to determine where clot originated and am having further investigations on my heart following an ultrasound (TEE) which showed a problem with my hart valves (asymptomatic).
From that moment I was called back into hospital and it was there that rheumatologist, cardiologist and haematologist together made the decision I needed to be on warfarin.
it is an anticoagulant, which makes it different from aspirin or clopidgogrel which are anti platelet. I am glad it is hopefully keeping me safe for now, but I really hope there is an alternative for me.
Thanks for explaining in such detail and of course it makes perfect sense that each patient is treated for the condition that caused their. I am sorry you appear to have (my interpretation/understanding) comorbidities that make it difficult to balance the medications.
It seems from what you say you are in safe hands and more importantly know where you stand wrt the medications that have been prescribed for you.
My reasons for posting/responding on this forum is to share experiences and what we have learnt from the same. Quite a few not so good things have happened to us, and you might say hindsight, but I believe apart from the stroke all other post-stroke difficulties that have arisen could have and should have been better managed e.g. the aspirin incident.
But that is water under the bridge.
Hope you get ride your horses again soon
Mum has many angels looking out for her. She deserves that at least
