Good morning, I need some advice/opinions, I am 51, had a stroke last year and have been on clopidogrel for the last 15 months and have been told that i need to go onto warfarin because i have now been diagnosed with APS. The problem i have is that most of my work involves either decorating or carpentry, due to the loss of my left peripheral vision i do still bump into things and knock things etc and also cut myself quite a lot. i dont know much about warfarin and the hospital haematology doctor didnt seem interested in telling me much about it so i thought someone might be able to give me some advice on whether i should go ahead with changing to it and if so what precautions i could take to avoid any major mishaps. would appreciate any opinions etc. many thanks.
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sawman
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Hello and welcome, I do suggest that you really have some advice re your Warfarin, from the clinic who is suggesting this change to you. They clearly think you need more than Clopdogrel, which is a good starting point. Being on Warfarin you will have to manage your INR, there is advice around on diet and supplements etc etc regarding how you use and regulate your Warfarin, and also a very good book around by Cath Atkin, How to Eat on Warfarin. Also as you are clearly having tests and things done at the moment, it is very important that your levels of B12 are tested also your D, Iron and Thyroid.
Hello, Many thanks for your reply and the info, I am waiting for a appointment to go and see a different doctor at the hospital who is on the list of aps specialists so hopefully they will go through everything, it just worries me that i wont be able to continue my job if i have problems like bleeding too much etc. i will ask them when i see them about the b12 and vit d etc. i will have a look at the website shortly. Many thanks, i will let you know how i get on.
When you get to your Specialist he or she will give you Warfarin and that will make you feel much better no doubt. Also your vision can be better probably and you can work better.
For us the bleeding is not the problem but the clotting. When the Warfarin has the right INR (thickness of the blood) you feel better and will not bleed neither clot. You will see.
I've been on warfarin since 2014 and have had several strokes, I still do as much diy and gardening stuff as I'm capable of. I too was swapped from clopidogrel when diagnosed with APSI think that's quite common. I can't say I have any more accidents than before so haven't noticed any more cuts and bleeds and tbh I bleed the same as my Son. Warfarin is just making your blood normal as opposed to too thick.
First I will introduce myself: I am NOT a medical professional, but I have been on warfarin for 17 years now. Sharing your concern regarding bleeds I gave up mountain biking -- though I still cycle on level surfaces. And I put aside my white water rafting trips. In hind sight I'm not sure I needed to do that.
Most people take warfarin because they have a sticky SPOT in their cicrculatory system: a heart stint, a heart valve issue, etc. But we take warfarin because we have a STICKY CIRCULATORY SYSTEM. For us, warfarin makes our sticky blood more noramal. And this means that we are not nearly as prone to bleeds as the "average" warfarin patient. Also, most doctos have seen the results of a warfarin bleed -- they can be bad.
In my 17 years on warfarin I have had no major bleeds. I have had a few huge bruises -- but those happened after expected events, such as a fall.
If you do start warfarin it will take you a while to process how your body processes the foods and activities that make your INR measured blood "thickness" higher (which is thinner) or lower.For the first months, until I got the hang of this, I followed my diagnosing hematologist and kept a ridiculously (?) detailed log of foods and activities and my INR readings. And on the official "coumadin" website you will find a list of foods which will effect INR numbers. I learned that, for example, for me that a lot of sun exposure will raise my INR. Sitting around recovering from a cold will lower it; which is often good as antibioditics will raise it.
At age 63 I am still active -- I hike, bike, swim, and, at age 63 I do not think I am going to return to thriling bicycle rides down Props Run Trail or hot, sunny afternoons riding down the rapids of the New River. But still -- no more migranes, no more mini strokes. Not a bad trade. You can make this work. Cheers!
Many thanks for that, and all the replies i have had, i too enjoy mountain biking etc and was planning a white water rafting trip myself down the colorado river prior to my stroke but it looks like that is currently off the list but who knows i may get to do it one day, I think i will have to give warfarin a try, i imagine it will be fine i just like to find out everything i can before going for it. Thanks again to everyone for the advice, it really is very much appreciated.
You already have some excellent information and advice about taking warfarin.
It is true that it takes a while to get the hang of dosing and eating with warfarin etc but once you discover how your body absorbs it and reacts to high vitamin K foods etc and you've found ideal INR range, you will feel much better and wonder why you weren't put on Warfarin sooner.
What GinaD has said about warfarin making our blood normal, as apposed to much too sticky is spot on and it would be super helpful if doctors explained it so clearly to us, instead of scaring us APS patients about bleeding.
I've never even had a serious nose bleed on Warfarin and I'm not saying that you won't bleed a bit more if you cut yourself but the good thing is that on Warfarin they can administer a vitamin K injection to stop the bleeding, if that ever happens.
Many of us have our own home Coaguchek INR testing machine, which can help us to stay much more in control of our INR. We use it along side regular vein INR tests and it can be really helpful because we can test more often and therefore know if a food has affected our INR, or whether our warfarin dose is correct and is keeping us therapeutic.
I used to be a professional singer and it was a very physical job, which involved lifting equipment and putting PA systems together etc. I bumped and bruised and occasionally cut myself in the process but never had a significant bleed despite having a high INR.
I think as long as your not doing any major contact sports then you will be absolutely fine on Warfarin and hopefully feel even better than you have before too!
Good luck at your appointment, ask lots of questions but ultimately "embrace the warfarin", it could well turn out to be your best friend! 👍😉
I have been on warfarin since I had mystroke three years ago. It was only after I suffered a significant stroke that left me in a wheelchair for 6months, I still have not yet regained use of my left arm/hand. And although I no longer use a wheelchair, I am not able to walk as I once did, or run. Fortunately, I have not had anymore strokes in that time. Yes, it is important to get your blood checked for your INR levels while on warfarin. Depending on my last reading affected how frequent my GP, wanted to retest me. I’m finally back up to once a month but it has varied from weekly,to every other week. As far as bleeding my biggest bleeding issues, solved themselves when I hit menopause. It would nevertheless be a good idea to wear a medic alert that lists anticoagulant on it, if you think you would be injuring yourself on a regular basis. With warfarin, you do have to pay attention to your consumption of dark green vegetables most likely you will be tested more frequently in the beginning stages of taking warfarin, so they know the proper dose for you. If you love eating a head of broccoli a day, continue eating that quantity, and the meds will be adjusted to compensate for that. The issue aises, when you never eat dark green vegetables, then suddenly start eating eating multiple heads in a day. It’s the vitamin K specifically that messes with the warfarin.so, if you eat a consistent amount of dark green vegetables the warfarin dose will be set to cope with your day to day diet. While in hospital I was tested daily. Of course getting my blood tested, is a minor inconvenience vs the major inconvenience of having another stroke. I hope this info is helpful.
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