I had a stroke 14 weeks ago. Lucky enough to get thrombectomy quickly. Put on Clopidogrel and understand there is a gene that can make it less effective, more so certain ethnic groups. No one offering this test Or playtlet function test that I can find. I guess I’m being anxious but if it isn’t working surely it’s best to know, even though I’ve been told very small chance 2% to 4%. Anyone else been down this rabbit hole?
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Hi @Ginny2 and welcome to the community. Sorry to hear of your stroke and hope you are getting on ok.
I am not aware of this issue with clopidogrel & I suspect given the low chances of it being an issue that the test is just not something that is offered unless someone has symptoms that suggest it isn’t working.
Do you have a reason for suspecting it won’t work or are you anxious about having another stroke as many are in the early days. If the latter then hopefully your anxiety will reduce over time.
Best wishes
Ann
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Hello @Ginny2.
Sorry you’ve had a stroke.
I’ve been down this rabbit hole and discovered the same as you. I also discovered that the actual risk reduction for having another stroke is around 0.9% (relative risk reduction is 8.7% but it’s the actual risk reduction that counts). Learn about ARR and RRR because it’s important where meds are concerned.
I decided to stop Clopidogrel because of the very low risk reduction and the relatively high risk of a severe bleed somewhere down the line. (My GP didn’t deny any of this and in any case, research is readily available these days. NHS docs tend to stick with what they’ve been taught and are sometimes unable to think outside of that).
I’ve been using a DHA + EPA supplement which works naturally to thin blood and various research studies have proven the benefits to be worthwhile for a number of other reasons.
Here’s an interesting read:
I don’t have a lot of faith in the NHS these days but I will concede that they are good at emergency care. Do your own research, fight for what you need and that includes insisting on the blood test to determine whether you do or don’t have the gene if that will put your mind at rest. I believe your concerns are valid and you don’t need the extra worry. If you can afford it, it might be less stressful to get a blood test done privately via a geneticist.
Anyway, I do hope you’re managing ok. Lots of people on this forum who can help if you’ve got concerns or need advice. Although we all recover differently, we still share a lot in common and are here to help each other. So do reach out when you need to.
Take care.
Trace
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Hello @Ginny2 - Nice to e-meet you and welcome to the community.
I hope you will find answers to questions and/or concerns you may have following your recent stroke. I agree with what Ann and Trace have said in their responses.
In particular, and for me personally, Trace has hit the nail on the head. Risk/Benefit percentages speak for themselves.
Your anxiety is totally understandable and nobody wants to have another stroke!
You have been told the very small chance of 2 - 4% of making the drug ineffective.
But, what Trace has done is some research which she kindly shares and which suggests
Ultimately, the choice is yours. Please do whatever research you need to do, gather the information, evaluate it and then do what you feel is right for you.
I believe there is no right or wrong answer here because no one can predict the future and no one can tell you if or when you will have a stroke, otherwise there would be no need for this community.
Wishing you all the best.
Namaste|
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Hi @Ginny2
Welcome to the community, I’m sorry to hear about your stroke. I hope you’ll find the Online Community helpful for your recovery.
You may want to speak with your consultant about your concerns, they’ll be able to help put your mind at rest. Also if you’re feeling generally anxious about another stroke you may find our information on anxiety after a stroke helpful.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
Yes, anxious about another. Seems the only way you can guess it’s not working if you don’t bleed heavily when cut, or bruise easily. Seems a bit hit and miss!
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Yes, I think that’s true,
Thanks for your reply. I’m wavering now. Spoke to my RA doctor today and he pointed out that most drugs don’t work for everyone. Trust your doctors he said.
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@Ginny2 Do you have any idea what may have caused your stroke?
For me, that was a good starting point when I was thinking about medication. Bearing in mind, meds like anti-hypertensives (if needed), antiplatelets like Clopidogrel and statins are standard meds doled out after ischaemic stroke, they are given to reduce the risk of further stroke with no guarantee of prevention. Whether we end up having another stroke depends on many other factors (or simply being unlucky), but medications should never be seen as the sole means of risk reduction. I personally found it too restricting being on Clopidogrel anyway - it meant, for example, that certain foods I enjoy and are beneficial to good health, I could no longer eat. It makes a lot more sense to me to make sure I’m not nutritionally deficient because when our bodies are being nourished properly, they will function a lot better and we will be a lot healthier and less prone to disease. I appreciate that not everyone sees things the same way as I do but I guess I’m hoping it’ll give a little more clarity to your own situation. And I apologise if it’s making it worse!
A reason wasn’t given for my stroke. I have (controlled) hypertension but no other co-morbidities. To all intents and purposes, I was pretty healthy and fit at the time. But, if I did have other co-morbidities, it’s possible I would be thinking differently. The only meds I take are for high blood pressure and I’m working on getting off those as soon as I can. I’m almost 2 years post.
Trace
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Anxiety post stroke is very normal & will hopefully settle. The meds are given to help reduce the risk of further strokes but they eill never completely remove it. As @Trace57 has said you need to look at other lifestyle factors too. Diet, alcohol, smoking etc.
The effect that meds have will be different for everyone & will depend on many factors. And yes most drugs don’t work for everyone but unless you try you wont know.
Hope you find the right route for you.
Best wishes
Ann
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Hi, I’m not posting this to make you more anxious but just to share my story. I was on Clopidogrel and Warfarin when I had my stroke and my Consultant said after I had it that it may not work for some people. I guess I was just one of the unlucky ones! It’s a very small percentage of people though and apparently I have “clotty” blood.
If I’d of had a test before, my stroke may not have happened, who knows but it may have also been much more severe if I hadn’t have been taking it! I don’t like to think of the what if’s thought as that only leads to bad thoughts!
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Thanks for your reply. It’s confusing isn’t it, trying to work it all out.
As my RA doctor said the other day, all meds probably have some element of not working for some people and they can’t gene test for everyone for everything!
I’m doing what I can to manage risk, mainly got my high blood pressure right down, and taking higher dose statin. Diet, which I find a constant pain, and two mile walk a day.
I’m letting go of worrying about efficacy, fingers crossed. 14 weeks since stroke.
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We all go through that same worry just after our strokes, but it does get easier, you can get to the point of not obsessing over it every single day. You’ve just had a life threating experience and you worrying about further episodes is just nature’s way of ensuring you take good care of yourself to prevent any further episodes. But we can only do the very best that we can because we not immortal, our bodies do wear out.
As I say to myself, I could be run over by bus in the morning. Learning to relax into your recovery will reduce stress and help speed up the healing. Not that you may notice that because stroke recovery is slow anyway but it’s steady progress.
Lorraine
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Thanks for your kind response. Things are getting easier.
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I’ve been on Clopidogrel since my stroke in Oct’ ‘14.
I had a PFO which allowed a clot to “escape”. PFO was closed in Nov’ '14.
Cardiologist recommended that as they couldn’t find what caused the clot that I stayed on Clopidogrel described it as “belt and braces”
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Thanks for your reply. I’m a bit confused; didn’t the PFO cause the stroke?
No one seems to know what caused mine, (had heart monitor for three days, no concerns) most likely suggestion was blood pressure, now got it down, with meds.
Clopidogrel does seem to be the go to choice, belt and braces, so sticking with it. Not much option really.
Thanks for your thoughts.
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Hi Ginny2 the PFO allowed the clot to go where it shouldn’t but the doctors could find any reason why a clot formed in the first place.
One of their ideas was that a bit of debris in my blood I (think like many thought) our blood is pure etc but apparently it’s full of all sorts of little bits junk, debris etc. Their best guess was that due to the nature of my PFO that a little bit of junk got caught and over time the first bit of junk caught another bit junk and it grew. Eventually the colt formed and then it got dislodged and boom the stroke happened. Although I didn’t know it at the time I did have a warning stoke a few weeks before - I thought my drink had been spiked in a bar
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Clopidogrel (and some other important drugs) is metabolised by the CY2CP19 enzyme that has more than thirty variants (known as allele). Some can prevent the drug working (known as loss of function or LOF), whilst others can cause it to work ultra rapidly. LOF would require a different drug, whereas ultra rapid requires a different dose. Around 30% of white people have one or more of the allele. This rises to 60% in some ethnic groups, particularly South Asian. The NHS does not screen for these alleles. Bristol University TAG published a report commissioned by the NIHR on behalf of NICE, titled: Clopidogrel genotype testing after ischaemic stroke or transient ischaemic attack. This was the input to a paper published by the NIHR in September 2024: Health Technology Assessment, Volume 28, Issue 57, ISSN 2046-4924: Clinical and cost-effectiveness of clopidogrel resistance genotype testing after ischaemic stroke or transient ischaemic attack: a systematic review and economic model. I was privileged to be a stroke-lived experience person along with another in the Brisrol University meetings. Incredibly generiously, they included our numes on the front cover of the paper.
As you had a thrombectomy, I wonder why you didn’t transfer later to an anticoagulant.
As you’ve had a thrombectomy, you may be able to input into a stroke lived-experience study run by Health Inovation Oxford, who have just held a meeting on that subject.
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Hi. I was put on aspirin for four weeks after and then just Clopidogrel., which I thought was an anti coagulant?
Seem to be very varied reports about its efficacy.
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Thanks for the explanation. They are all so different it would seem, as they keep telling us!
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