Hi! I started on anticoagulation in August. I started with apixaban 5 mg twice a day. I got very bad intermittent chest pains that worried me from the medicine that I never had before. Then I got gastritis. the doctor switched me to half dose to see if I could tolerate that and the same thing happened. I tried what we call in the states s Xeralto next and same problem with Gastro issues. on Monday I started warfarin. Friday my doctor took my INR and I’m waiting to hear what it is last night. I couldn’t bring myself to take the Warfarin last night. I’m a Chad Vasc, 2 but I get fairly frequent episodes. I don’t believe that the risk with my score is worth the risk of the anticoagulation at this time. one doctor said it’s my choice and the others feel I should be anticoagulated. It’s causing me so much stress. My blood pressure is normally wonderful while I’m sleeping especially and I woke up with swishing in my ears and my blood pressure up. I’ve been having so much anxiety that it’s paralyzing me. I read on a PubMed research article that in the first 30 days of starting warfarin is when the hemorrhages happen most. How does one take it with a low to moderate Chad score?
If anyone is on warfarin and has done well, I’d love to hear positive stories, and I need to know the truth with issues people have as well to help me decide. I just wonder if I can wait another four or five years to start when I’m closer to a Chad vasc score of 3. It’s a gamble either way. I’m turning 68 in February.
Has anyone else gone through this who’s a chsd Vasc 2?
Thanks. Wishing everyone wellness and peace of mind and heart and spirit.
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Fblue
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Anything new is scary and I know that feeling of damned if you do damned if you don't . I was on warfarin for years, no problems, it was suggested I could change to Apixaban so I did. My husband is on warfarin and has been for years also. He is usually within range and only has blood tests every 10 -13 weeks.Many people on here have their own finger prick testing machine to save trips to surgery. Bleeding can be stopped, strokes not so much sadly, thus I was happy to accept anticoagulation.
In 2019 I was a CHADsVASC 2 - one point for being female one point for being over 65 . No comorbities. There is some controversy over whether the point for being female is valid and my cardiologist was obviously following the revised European Society of Cardiologists guidelines that if one of the points is for being female the initiation of anticoagulation can wait till the score reaches 3. I had a TIA. This was very mild and the cat scan showed nothing but my GP was sure from the symptoms that it was indeed a TIA. It was 6 months after my previous afib attack. I was lucky - it could have been a full blown stroke. You are lucky to have the choice of Warfarin - here in France it is considered highly inferior to the DOACs and my GP will not prescribe it. You could take it and see how you get on. There are many here who have taken it for years and are very happy on it. I am stuck with Apixaban which gives me gastric side effects ( Pradaxa was even worse) and makes my joint paint worse.
Thank you! I can’t imagine having to stay on the apixaban with the gastric issues. I stuck it out for 4 1/2 months and it was really difficult. It’s not like we’re on it for 10 days like an antibiotic, this is lifelong. The doctors have been talked into by the drug companies that it is far superior and no one gets side effects. It sure is easier than warfarin, but from other pages I’m on with atrial fibrillation lots of people get gastric issues from the newer drugs. I hope you feel better. Thanks for sharing your experience. I appreciate it. I also have one for female and on for being 68
My gastric side effects are not that severe ( nowhere near as bad as with Pradaxa which is well known for gastric side effects) but the worst side effect I get is the pain amplification. I realised it was doing this when I was taken off for 8 days before my first hip replacement . The pain in the hip joints reduced a lot even though the xrays showed no cartilage. Same when I was taken off before my 2nd hip op. My afib episodes are quite frequent and having had the TIA I have no choice. I have experimented with a lower dose and that is tolerable but I would never stop taking it altogether.
I've been taking Warfarin (been in use in this country for about 60 years) for many years and get on with it fine. I take mine mid breakfast and have no problems with it at all.
I too have a sensitivity to drugs but having helped to run a nursing home and seen the horrible results of people having had a stroke I am grateful to be on anticoagulants. At their worst people can't speak, eat (are fed through a tube in their stomach), understand what's being said, doubly incontinent and look out on the world with bewildered eyes. It's pitiful and never ever do I want to take the slightest risk of ending up like that.
If you are over 65 I think it's a good idea to take your Warfarin but as you have a sensitive stomach take it mid meal.
I have reread your post to me multiple times and I so appreciate hearing about the devastation with the strokes because I only know two people that have had them. One of the people drank a lot of alcohol which, since a fib in 2007, I don’t drink at all and the other person’s story I don’t know, so reading your the stroke risk and damage real. I guess I was fortunate not to have a stroke. I’ve had a fibs since 2007 and since I managed it all those years well with meditation and other natural ways, I found it hard to accept that right at 65 like a switch the doctor wanted me on a blood thinner. Thanks again for sharing your experience to help me.
Hello Fblue. I’m sorry to hear this is causing you stress. I very much empathise as I could not tolerate anticoagulants when I was first diagnosed in late 2022. Very quickly I experienced gastric pain which was indistinguishable from chest pain I was so stressed about what to do I literally made myself ill. I was constantly worried and researching strokes & brain bleed online - what a cheery Christmas 2022 was! My CHADS-Vasc score was 1, but only due to being female & I had only had one 30 second burst of AFib. After consulting with my EP, I came off the anticoagulants as NICE does not recommend anticoagulants at 1 & they made me feel so unwell. However, if I were CHADS-Vasc 2 and experiencing frequent episodes, as you say you are, then anticoagulants are universally recommended and I would certainly be speaking to my medical team to find an alternative that suited me. I hope warfarin proves to be your way forward, please try not to worry and do keep taking your recommended anticoagulants to stay protected.
Glad you can wait a while. I so relate to your researching, I can’t even tell you. I’m female I’m going to be 68 so once you’re 65, you get a point. I have none of the other comorbidities. Thank you God. Very clean lifestyle. Thanks for responding and for the good wishes. I wish you so well all of us.
I wanted to tell you for your future reference, I am not experiencing Gastro issues on the warfarin. It’s only been four days on it, but none of that that I had with the DOACs, so that’s good.
I just wonder if I can wait another four or five years to start when I’m closer to a Chad vasc score of 3. It’s a gamble either way. I’m turning 68 in February. Has anyone else gone through this who’s a chsd Vasc 2?
Yes. When I was a "2", both my cardiologist and myself decided it was in my best interest to wait on thinners, however I was only having afib episodes every couple of years at that time.
I'm not going to give you any advice and please don't take anyone's advice here whether or not to take thinners. It's a bespoke decision between you and a doctor you trust who knows you and your medical history.
I was diagnosed with AF in January 2010 and was put on Warfarin, I came off it onto Edoxaban in August 2023. No sweat and no problems. My GP has a not very professional bias to these NOAC's however she wanted me to try other meds to deal with pain issues in my shoulders and she felt Edoxaban would be a better mix of meds. Well that was a total disaster. Pain is unresolved thus far, but I've stayed on Edoxaban. HOWEVER, if I have any issue looking forward, I'll return to Warfarin. No question. I would add I had ( and still have ) my own Coaguchek XS INR testing device. This is the way to go if you are on Warfarin. I've never obsessed that much with Chads scores. I was put on Warfarin by my Cardiac Consultant in 2010 .... who the hell am I to argue with him or worry about Chads scores. He put me on Bisoprolol at the same time and I had more problems with Bisoprolol at the time than I ever had with Warfarin, which I might add, I took at night. The dose I was on is irrelevant to you as my dose was determined initially by my Consultant during my hospital stay and then over the years maintained by my local INR Clinic and was personal to me. Doses can vary dramatically, person to person in order to keep the patient within the theraputic INR range. Some peeps can stay in INR range with a daily dose of say, 5 mg of Warfarin ..... many other peeps need say, 13 mg to stay in the same INR range. Just the way it is. I found when I first went on Warfarin it took about 2 to 3 weeks for my body to adjust to it and settle down to a steady, stable INR and diet does play a very important part not just in this initial stage but ongoing too.
I'll be blunt ......... if you choose to play Russian Roulette with your anticoagulants then your future life must be regarded as very questionable. One thing - GET THIS - Warfarin hates ... just hates - being switched on and off like a flow of water from a tap. You get on it , you stay on it as directed, have your INR done as directed, watch your food intake (diet) as directed. The only thing that matters to Warfarin is STABILITY, STABILITY AND EVEN MORE STABILITY AND YET AGAIN EVEN MORE STABILITY ....... mess with that formula at your peril. When I was on Warfarin I was in my target INR range around 95% of the testing time. No sweat. Well protected against a stroke with that figure. I was 65 when I went on Warfarin and 78 when I came off it. No sweat. Oh yeah, no bleeding internally or externally either unless external bleeding was caused by my own stupidity/carelessness doing DIY projects around the home.
Having read on this forum over the years, you are not Robinson Crusoe, not the only patient who has been unable to cope with these NOAC's ... won't be the last either. That's the way it is with new drugs .... despite all the laboratory testing before they are launched into the marketplace.
I totally agree and support jeanjeannie50's words too by the way.
Thank you so much for this invaluable information Ben. . So appreciated. I’m glad to hear positive results for you on long term warfarin use. And thanks for validating the problems I had with NOACs. . Sometimes our doctors say we’re the only ones who ever had side effects from it, but yet these forums are wonderful, because when you hear the anecdotal experiences of people, you realize you’re not alone as you said.
You sound very knowledgeable and I’m wondering what you think of the procedures to get off of blood thinners if you’ve researched them at all?
one other question then since you have a lot of experience from warfarin. In regard to the stability what if someone has to hold it for a procedure. Is it safe?
Fblue ......... absolutely. No sweat! .... if I've not misread your question.
I have had to stop Warfarin 4 times for a variety of medical procedures, a CT Scan, two seperate cataract surgeries in different years and finally, the humdinger ... a partial right knee replacement. In each case the Lead of each medical team of each procedure advised what was needed in stopping and restarting and so long as you do as you are told ... no sweat! The real challenge was the knee replacement, I had to stop Warfarin 6 days before surgery and this was sooooo easy as I self tested my INR on my own device so I knew easily when my INR was correct for surgery. I even took my handheld device to show the surgeon and anethestist what my reading was. Then on the day on the slab, under the knife (so to speak) and when I was back in my room the nursing team gave me two injections of a bridging anticoagulant (Fragmin ) into my tummy area. Then that night at my normal dose time I resumed my dose of Warfarin and just carried on with my normal doses. Again soooo easy, I just kept monitoring my INR with my device ( and the test strips) until I was back to my normal in range INR and .... bingo ! Never looked back. The hardest thing was pain control post op and even that wasn't an issue ..... I'd been prescribed by my Dr. - CoCodomol 30/500 and that was OK and didn't conflict with my Warfarin doses.
I keep referring to my device ..... in a simple description, it operates in a similar way to a diabetics blood sugar testing device. But it is larger. If you wanna see it Google the Coaguchek XS website. However there are other brands in the market place too. I think YouTube may also have some short videos on how it is used. Worth a look.
⁸Your CHA2DS2-VASc score doesn't take into account the frequency or duration of your AF episodes.I heard they are doing a trial, giving patients anticoagulants only when they have an AF episode lasting at least X (5.5??) hours duration and ceasing medication Y weeks after episodes end.
The aim obviously being to only use anticoagulants when the risk of stroke is highest and avoid the risk of using anticoagulants when the risk of stroke is lower.
That indicates a belief that the risk of stroke increases with frequency and duration of AF episodes - which seems quite logical. So I wouldn't base my decision on whether to take anticoagulants or not just on my low CHA2DS2-VASc score. My score is 0 but if I had frequent episodes lasting several hours or days I'd be discussing starting anticoagulants with my cardiologist and he'd have to convince me otherwise
I heard they are doing a trial, giving patients anticoagulants only when they have an AF episode lasting at least X (5.5??) hours duration and ceasing medication Y weeks after episodes end.
That would be the REACT-AF trial in the US for CHADS 1-4. One cohort remains on thinners throughout study. The other cohort only takes a thinner if an AF episode lasts over 60 minutes and then only takes it for only 30 days. These would be NOACS, not Warafin.
The 60 minute figure is kind of arbitrary and somewhat based on the battery limitation of the Apple Watch, which only is required to be worn 16 hours a day. So assuming someone got an undetected a fib episode, when not wearing the watch, the researches are really allowing 9 to 10 hours in a fib before starting anticoagulation.
Thanks Jim, yes that looks like the one. I was reading about research that probably helped lead to that study."Among more than 450,000 patients included in the study, results suggest patients experiencing an arrhythmic state for 5.5 hours was associated with a more than 3-fold increase in odds of a stroke, with a 5-fold increase for stroke observed within the next 1-5 days after experiencing AF."
The frequency and/or duration of PAF episodes is not considered in CHA2DS2-VASc scores. To me this means we shouldn't think CHA2DS2-VASc score is sole determinant for needing anticoagulant.
I’m due to start apixaban shortly and been told to take any acids with them.!!! I was on warfarin a few years ago and didn’t have any side affects at all but they won’t put me back in warfarin now.!!!
I’m not concerned about taking apixaban but I don’t want to be taking anything else ascc vs well just because I’m taking apixaban.!!
There are currently ongoing drug trials for newer anticoagulants other than the DOACs and warfarin but it's still a few years away. It would be a welcome relief for those who need and want protection from devastating stroke but without some of the side effects (and worry) of the medication.
Yes it would. So happy to hear this. Where do you think they will be available first? What country are the drug trials taking place in? Thanks for this info!
These are current ongoing trials by biopharmaceutical companies in the U.S. In other words, it will be a while before it's available. They have to be validated at many trial levels including the FDA and that takes years. And they will be the first of the factor X1 inhibitor to demonstrate an unprecedented reduction in major bleeding side effects compared with a DOAC. Plus have a higher percentage of thrombus reduction than a DOAC. Though we also still don't know the costs once it's approved. But it's good to know these trials are happening. For now keep taking your warfarin or DOAC to avoid stroke.
One more question. Do you know if any procedures are also being tested that would be an upgrade to the watchmen or do you think the watchmen is good now? I’ve been healthy in regard to comorbidities which I have none of, just a fib’s, so I don’t want to do some thing that might make me worse off, but I don’t want to stay on blood thinners for many reasons, one of them being that I have severe osteoporosis, and warfarin reduces bone density, , and I cannot afford that. Thanks
Unfortunately any prescription medication has trade-offs and we can sometimes find ourselves between a rock and a hard place. Adding to that some GPs are not always well versed in afib.. Because we are not doctors it's best to consult with a specialist regarding the Watchman even if you have to get on a list for a consultation. Write down your questions, concerns, and take these with you to the appt -- you need answers. And just a reminder that some of the pubmed sites include trials with patients who have different co-morbidities, genetics and ages and you can't apply the same results. Plus if the studies are done years ago there can be, in most cases, recent information that may add if not override it.
I chose PRADAXA and team 110mg x twice. I take with fruit/juice.
Other pills AM and PM so including PRADAXA no big deal.
Also it has an antidote.
Bad news not to get a suitable anti-co-agulant.
I guess baby aspirin would be better than nothing.
I had a stroke because I had undiagnosed AF and Thyroid Cancer.
Of course it is your call.
Stroke was mild but talking again, right fingers on hand and dropsy wasn't good for 3 months, with dropped mouth. Swallowing coming right almost 5 years from Stroke.
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