Just laying around today. No energy to do anything. Almost went back over to the hospital but didn't. Just a waste of time. Drs don't believe anything about the horrible side effects I'm having taking this poison Eliquis. I honestly don't know how much longer I can do this. I'm so sick. I'm getting where I don't care. I've tried to deal with this Eliquis but the longer I take it the worse I get. It causes me terrible aches, headaches, can't keep my BP at an even keel, hair falling out, eyes hurt, even teeth hurt sometimes, causes more palpitations. Can't gain weight. Weak. Can't use any of my herbal remedies I always had such good luck with for different ailments. Chest pain, heart pain, balance off, anxiety worse, depressed. And all the Drs can offer is switch pills!!!!!!!!. Cardio Dr I see wanted me to switch to Xarelto. Oh I don't think so. It can cause worse bleeding than Eliquis and also causes heart pain. And most of the same side effects. How for God's sake are people supposed to live like this? No quality of life. The longer I take this poison the worse I feel. And I've tried. I just can't take prescription meds. My body wants to reject them. I think CDreamer on this forum posted the article about the gene we have that metabolizes what we put in our bodies. Well I guess my family all had the gene go haywire because no one in my immediate family can tolerate prescription meds. But I think my sister and I are the worst. I had an online chat with a rep from Pure Prescriptions supplement company about their nattokinase awhile ago. She said it's not a blood thinner but basically eats up the fibrogen that builds up in the blood. She says the fibrogen acts to build like a skeletal structure in the blood vessel and catches the blood cells and forms a clot. So reducing the fibrogen in the blood keeps these structures from forming. She says there's no good trials for natto as a blood thinner or anticoagulant but I know people on this forum use it. She said she has customers who have Afib and use natto. The company has a number your Dr can call and speak to her about natto but she's not a medical Dr so she said she usually gets shot down. I told her it was worth it to me if my GP would at least talk to her. I'm afraid of ending up like my dear friend. He didn't start to go downhill until he started on the Eliquis and metoprolol. That was only a year ago. I saw him lose weight and his QOL disappear. And all the while he kept his good humor. Within that year his arteries around his heart plugged up. Not before the Eliquis. After. Because it keeps the body from metabolizing our nutrients properly. Calcium builds up in the vessels. He too was sensitive to prescription meds like me. I miss him so.
Can anyone on here give me an update on if you are still using nattokinase and or any thing along with it. And how you transitioned from the prescription meds to the natto or other alternatives. Or any others using alternative treatments. Anyone. Please.
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Ha ha. My insurance won't approve warfarin anyway. I was told it costs them too much to send you for the inr checks all the time. Lol
Hello Belinda, really sorry you are having such a difficult time. Having just looked at your recent posts, clearly there have been a lot of negative things going on in your life and I really feel for you. The problem is that I, and so many others here take Eliquis (Apixaban here in the UK) and I just don’t recognise the side effects you are experiencing. Of course we are all different, but what you are saying about the way you believe it effects you would undoubtedly cause a significant amount of comment from the several thousands of forum members if was causing them similar problems.
I think you need to find a way to establish if it is the Eliquis that’s the cause or something else which is causing you to feel so wretched. I know you feel your medics are not listening to you, but because it is so unusual and rare to associate Eliquis with the way you feel, perhaps they are at a loss to know what to do for the best. One thing that is absolutely for sure, if you have been prescribed an anticoagulant, you should not take the risk of stopping because the consequences of doing that could be seriously life changing and don’t bear thinking about. The problem with “natural” alternatives is that their effectiveness cannot be measured and they are not tested or subjected to the trials that drugs undergo. So basing their effectiveness on whether or not you have a stroke does not seem very sensible.
Of course, your symptoms could also be due to other health issues unrelated to AF. I’m sorry that I am probably not being very helpful but in all honesty, it would be wrong to assume that Eliquis is the only culprit here, but the only way to find out is to try an alternative, of which there are many, but taking no anticoagulant would be a very dangerous route to take. I hope you are able to find some solutions and that you get the help you need, best wishes.....
Thanks but I have no other health issues now. And yes the side effects I suffer from are listed in the info on the drug websites here in the USA. Drugs.com is a website of the Federal drug Association who approves these drugs and all the side effects are listed. Granted some are supposedly more rare than others but they do exist. And maybe you haven't seen them but I've read posts from people on here who have some of the same symptoms I do. And there are other forums out there I have been to and people have a lot of symptoms. Yes we are all different and have different reactions to these meds. My partner takes Eliquis too and he has some of the same symptoms I do. He chooses to skip a dose once in awhile because it makes him feel so bad. And as I said I don't metabolize these meds well. My body just doesn't. Runs in my family. My Dr from years ago knew how I couldn't tolerate prescription meds and told me once I'd always have problems. He was right. Taking another one doesn't work for me. He said once I took one and had bad reactions if I took another one that was pretty much the same thing I'd still have problems. It's just the way my body is and I can't change that. It would be nice if I had a Dr who would at least listen. Run some tests to see if I am indeed deficient in something. But the insurance I can afford and the Drs in my plan don't do all that. I don't even know if I actually have Afib. I remember a couple incidents in my past when I was in my 20's and then in my 40's when my heart raced and no one said I had Afib. But Drs just assume that everyone has it when they don't even test anybody. Just here's some pills and I'll see you in 3 months. Anything I've learned about Afib has been through this forum. I ask the Drs questions and get no answers.
I know it’s difficult Belinda and yes, I’m well aware of the long list of possible side effects on the leaflet but here in the UK we have a fairly benign painkiller called Paracetamol and you should see the list of side effects that has....call me an old cynic, but published side effects tend to be there more for protection against litigation than anything else. I can only repeat what I said earlier, there are millions of folk taking either one of the DOACS or warfarin and on this forum there are relatively few numbers of folk complaining about minor or moderate side effects, and we rarely hear of more serious problems like the ones you describe. I understand your frustration and yes it would be good if Doctors were more receptive but at the moment, the stark fact is that it’s getting more difficult to see them. I’ve just had to download software to enable me to have a video appointment and when you get to my age, these changes become more difficult. I wish I had a magic wand, but I haven’t, there are no easy answers, all we can try to do is listen, come up with suggestions that may help people to cope better with their problems.......if you are not even sure that you have AF and getting tests is difficult, think about investing in a Kardia then both you and your partner will have a much better opportunity to monitor your heart, wherever and whenever you want.
It seems to me from reading the posts on this forum everyday for 2 years that women complain more than men about side effects of prescription meds especially the DOACs. There have been complaints of joint pains and a lot about hair thinning. Prescription drugs are prescribed on a one size fits all basis and it has been found that women actually metabolise drugs differently to men and that the standard doses of some ( though not all ) can be toxic to the point of overdose for women. This problem is hardly known about by most doctors and compounds the sort of nonsense they come out with denying the problems could possibly be caused by the drugs. One of the reasons for this is cognitive dissonance. Doctors cannot bear to acknowledge that sometimes the drugs they prescribe are actually poisoning some of their patients even if the majority of them are doing alright on them.
Yes us women do metabolize these meds quite differently than men. Shame Drs don't admit that. Women's organs are all generally smaller than in a man. Why women have greater issues with the lungs. I saw my GP awhile ago. She does listen and she does believe I have the symptoms. I don't think it's a coincidence that my ex husband whom I live with, has bad side effects to. He says he has had angina on occasion. He buffs and puffs when exerting himself which he never did before. His legs get weepy sores. He's retaining fluid. I know when he's not feeling especially unwell he sleeps a good part of the day. I feel that the ones who don't suffer from the side effects just don't seem to understand. I'm told in the UK there's a long list of side effects handed to them by their pharmacists. Well we in the USA get a list also BUT it still doesn't have all the side effects. And I don't run and look them up. I know my body. And when I feel something then I will look and see if it may be a side effect. Sometimes not. But it's common sense when you are experiencing what you didn't before taking a medicine then it's a side effect of that medicine. Sometimes they go away. Sometimes not. With me they aren't and neither in my ex. His Drs at his VA clinic he goes to don't listen either.
Back to my GP. She said she can give one person a med and it's fine but the next person can't tolerate the same med. So she will admit that much. I wish some people would just remember that. We ARE all different. You always seem to remember that. 😌
I want to see another Dr who was in my plan. He's kicked out of my insurance group because he didn't follow the insurance guidelines. My friends had him And says he's very open minded. And this insurance group is bad about not wanting to do testing. But I will find the means to see this other Dr. Private pay. Even just for a consultation. And sometimes the Drs will accept less if you are paying cash. It would all be so nice if this country could get the politics out of the medical system and keep the insurance companies from calling the shots. Maybe then Drs would doctor like they used to. The campaigns are still going on here. And Biden and Trump both say they will fix the medical system. Lol 😆 Americans have heard that same old line for decades. Yes fix it so it is fair for everyone. Keep politics out of it. Make tests and procedures available to everyone. Surely if the USA can provide free care (good care) for those who come here illegally, the USA should be able to see to it that the legal citizens can get the care they need when they need it. My gosh there was a woman who had come to the USA just from Guatemala illegally. She received a heart transplant. I couldn't believe it was allowed to be made public because you know lots of people were up in arms about that. Even the inmates in prisons here don't get as good of care as the illegals. The medical system here just gets worse for some. If you can't afford the high end insurance and get the better Drs you really are left out. How barbaric.
I’m sure there is a lot of truth in what you say but I’m not qualified to comment, particularly on how medication might effect females differently to males. Fortunately this forum has a number of regular female contributors who are extremely well informed and willing to help in this area. They also often offer great advice for folk with anxiety and stress related problems which is probably another area were some (not all!) males are a bit lacking. Totally unrelated, my wife and her brother both take statins. He breezes through with no obvious problems and my wife has to go through hoops to avoid muscle pain. This may well support the point you make.
Generally, the end result is that folk like Belinda, faced with some very real problems, receive a variety of hopefully useful advice which helps them to overcome their problems and move forward. Where I get worried is when people talk about either stopping their anticoagulant or replacing it with herbal or some other untried and untested alternative. Having worked with stroke victims.....we’ll need I say more!
A stroke is a very real threat. BUT if you look at the NICE tables for increased stroke risk according to CHADS2VASC score for patients with afib you will find that the differences in risk between those taking anticoagulants and those not is actually quite small for those with a score of 1 or 2. So the risk of something that might never happen and on a statistical level is not that high ( and this just applies to the question of anticoagulation not the higher risk from having afib) has to be weighed against the daily misery caused by taking a drug that makes you feel awful. It is easy for those who have no side effects to say "don't stop". Nattokinase is well documented for it's anticoagulant properties - in Japan because natto (from which it comes) is actually part of the Japanese diet. One of the features of the traditional Japanese diet was that a far greater proportion of strokes used to be haemorrhagic ! The problem is knowing how much to take.
Yes I read that there's actually a 2-3% greater chance in stroke in those who take the blood thinners than those who don't. There's such conflicting info, in my opinion, simply because the thinners are really not that well studied. They can't and don't do long term drug studies because big pharmas want to push anything that might be somewhat promising through as soon as possible so they and all their rich investors can start making the big money. That's why I say it's all about money and not really caring about the patients. There's the 7 year post trials for these drugs. They are watched (supposedly 😒) for seven years after they are in the market to see what other side effects may pop up. So patients are still guinea pigs even after the drug trials. This is when the lawsuits also start popping up. I understand Xarelto has had several lawsuits against Drs for not warning that it has a more serious risk from bleeding than some of the others. Why I declined it when Dr wanted to switch me. Why would I want to switch when there are known lawsuits? Another way that tells me Drs don't care. Geez. Yes I agree about the dosage for the natto....
Some gal had posted here that she had been taking natto for five years but wouldn't give up any other info. And some people say it's better to eat the natto itself. Believe me I'm not going to do anything cockamamy. But I don't know if I can suffer such horrible side effects forever. Just makes it more stressful for the body when it has to try and deal with the side effects. Does anyone consider how stressful it is for the body? Everyone talks about mental stress which is also from dealing with the side effects but the whole body is under stress trying to find some kind of balance. The human body was not made to take in all these chemicals. Just the way I see things. It seems logical once a person thinks about it. Geez. Some of these Drs might try thinking once in awhile. What about that? 😒😂 Why I love reading your posts. You are a thinker.
It's almost 4pm here. Later in the evening where you're at? UK or France? I know you told me. I've forgotten. Another side effect. 😜 My ex wants to vote early before the presidential election Nov 3. We are given a short time to vote early if we want. I was trying to give him directions where to go. It's south of our house here on one of the main highways that runs north and south through the city. Called Woodland Blvd. Now mind you he's been in this house for 38 years and he couldn't figure out what highway I meant. And he knows this city like the back of his hand. He finally got where I meant. Left to go vote and came back and said he couldn't find the place. 😕 He's been forgetting things he should know a lot since he's been on the Eliquis. And he's said so himself. I'm not as bad. But he'll try again tomorrow. I think early voting is a couple more days.
So bye for now. I have 3 cats waiting for food. What a life of Reilly they have. 😻 You take care. I was thinking one day. Wouldn't it be something if all the people in this forum could meet in person? What a hoot that would be. 😊
Sorry to read of your problems Belinda. I started on Xarelto, had nasty reactions and switched to Eliquis, no problems at all. So who knows?! Hope you get sorted out soon 🤗
Eliquis is what I take. All problems. The opposite from you. Was offered Xarelto. It has had many lawsuits against it and can cause worse bleeding than the Eliquis. So I said no thanks. I also believe the inr should be checked for these noac's too. Again we are all different. Drug trials do not mean that EVERYONE will do okay on a certain drug. I read on another forum a person's pharmacist was on Eliquis and had a heart attack because the Eliquis was not working. Wonder how many other people could be walking around like that woman..
So sorry you are suffering. It’s not until doctors take these drugs themselves and suffer the consequence that they have an inkling of what we go through when we cannot tolerate prescription meds. Unfortunately that is the way of their training and belief system and again, unfortunately, I have a lot of anecdotal evidence that if you complain you are labelled as being anxious, hysterical and dismissed accordingly - which made me feel - anxious, hysterical and very, very angry - so a doctor’s self fulfilling prophecy.
Thankfully I managed to find a different sort of doctor and the only suggestion I have is to suggest looking at this website - Metabolic Cardiology expert - Dr Sinatra - heartmdinstitute.com/heart-... but even he will say that if you have AF then stroke is your biggest risk factor and the best way to mitigate the risk is - anticoagulants.
If you refuse anticoagulants then your next best option is to be super informed about nutrients and become your own expert and that means study - and this is a good starting point heartmdinstitute.com/heart-...
In the UK there are alternative treatments for those people who really cannot take anticoagulants of any sort, which also exist in the US at a price, but first you would need to prove you are at serious risk if you take anticoagulants but I wonder if that is something you could explore with your insurance company?
You could also look at buying your own coagulation machine and doing your own INR testing if you go the Wafarin route, certainly there are quite a few people on this forum who have done and continue to take that option.
Taking back some level of feeling in control is my best suggestion. If you are so against taking prescription meds you have choices but you need to understand the risks (and possible benefits) of those choices and researching and becoming informed is the only way to enable you to argue your case.
I find it hard to believe that doctors would prescribe anticoagulants without evidence (ie: ECG trace) showing AF. If you go down the ‘natural’ anticoagulant route you would need to find someone with the relevant training plus a medical training plus nutritional training to do the relevant tests and advise and they do exist, but cost. And that’s your Catch22.
I know life is very difficult for you and you are grieving for your friend which will exacerbate and worsen your symptoms. I wonder though if you could find some way of making a positive plan of how you can take your next step, I wonder if that may help?
Taking control of your monitoring - take your BP daily, buy a Kardia and record your own ECG, keep an accurate health journal of symptoms, thoughts and emotions and routines. It is amazing the revelations that taking very these very simple steps can reveal and then you can take this to a doctor, giving chapter and verse. Start researching yourself. That’s what I found I had to do because no one joined up the dots.
I doubt whether you will get much response from people who may take herbal products, mainly because they tend to get shot down in flames so either keep quiet or go elsewhere but I watch with interest.
Right now you are emotional and it is hard to absorb information when you are in an emotional state so maybe keep coming back to these response and know that we care enough to respond and hope that they are useful for you.
I’m sorry that there is no easy answer. Best wishes.
A good reply CD but speaking personally, I try not too poo poo herbal remedies but when it relates to something as important as anticoagulation, I think it is important to mention that they are not (as far as I know) subject to trials and testing which apply to more conventional drugs. Anything which helps folk to make an informed decision about their medication has to be helpful and hopefully with so many different opinions expressed on this forum, folk are able to choose which best suits their needs.....
All your advice is very good. Oh yes I had the EKG and all that. All the other you mention is out of the question for me. Can't afford any of it and insurance doesn't cover it. Can't afford a kardia. The inr machines run into the hundreds of dollars and more. So I've done the research on all that. My insurance I can afford doesn't allow another Dr. It seems even though there are other specialists in my plan, each GP chooses what specialists they want to work with so to get another referral for one is tough. I can only try to get my GP to agree to get me referral to see another one or maybe borrow from someone and do it myself. Private pay as you all say. Drs really are the biggest obstacle. No wonder people strike out on their own. I do know staying on these blood thinners will shorten my life as it did my friend. Drugs don't always help. Sometimes they do more harm. And it seems nowadays that too many Drs just don't care. So you bet I'm angry. Over 700,000 people died between the UK and USA in one year from the side effects of prescription drugs. More than illegal drugs or drug overdoses.
There is so much help being offered here. Perhaps go through it all and select what may be helpful for you, make a plan, and work on those ideas .
I think you should speak to your doctor again, even though you are dissatisfied with him or her. First of all, ask them to explain in a much more detailed way how they know that the anticoagulant is not the cause of your symptoms. Secondly, ask them to explain what they think the cause of the symptoms is and, again, how they know this. This seems a useful approach since it puts the ball into their court. They will either have to present good arguments and evidence for their diagnosis or admit that it is not certain. If the latter, then you have got good grounds for asking them to investigate further. If the former, then at least you will have a bit more information and , possibly, a bit more confidence in the diagnosis. If it is possible, ask to see a different doctor -then you could see if his assessment agrees with that of the previous doctor.
Have you ever had the tests you were supposed to have for a lung problem? And if so how did they turn out?
I think that if you are convinced Eliquis is poisoning you you should stop taking it and be prepared to take your chances with a stroke. That is a very unusual thing for me to say and will probably be considered irresponsible but I don’t believe in taking meds that ruin your life unless it is a short term course of treatment like chemo.
But then if you still feel ill your doctors will have to search harder for a reason. It is sad that your insurance won’t cover the procedure to prevent stroke in those who genuinely can’t take anticoagulants, though as you haven’t been able to try the full range available I guess you wouldn’t be eligible anyway. It does seem unfair.
I hate taking prescriptions ... my cardiologist INSISTED THAT I TAKE SOMETHING because of afib ... l chose Eliquis for various reasons. Zero side effects.
I was a total “hold out” ... l took nothing but aspirin and natural supplements and it was working ... but then my cardiologist said a few things that really frightened me ... so l did tons of research and chose Eliquis which incidentally is the most expensive product here in the US. I suggest that you check out Dr. Sinatra’s protocol for afib ... l take his supplements as well as other things such as daily rooibos tea. I haven’t had an afib issue for 8 months and feel fab!
I agree with Buffafly. The only way you can be sure that the Apixaban is causing your symptoms is by stopping it and then "rechallenging" by starting it again. . If the symptoms stop and then start again when you rechallenge you can be fairly sure the drug is the culprit. However as has been pointed out you are risking a stroke. A less drastic solution would be to reduce the dose by half by breaking the pills in two . You could then compensate for the reduction by taking a small dose of nattokinase. I believe there has been some testing of nattokinase in Japan. I was taking nattokinase (but at a low dose) before going on to Apixaban . I still had a very mild TIA. I often wonder if I had been taking a slightly higher dose would I have been ok? If there is an improvement in symptoms with the lower dose you could try stopping it altogether to see if they disappear and increase the nattokinase. Did the rep from the supplement company give any indication of the dosage to be used?
Oh I stopped the Eliquis while in the hospital just recently. Or rather the Drs did to do an angiogram to try and see if something there to cause my heart pain. And a couple days off the side effects almost disappeared. And when the cardio Dr came in to tell me the tests were negative I told him the side effects had gotten much less. He didn't comment. Just said I could either stay on the Eliquis and use nitro for pain or switch to Xarelto. I said no to Xarelto because it also causes angina. So I'm back to Eliquis. But no nitro. Insurance companies frown on anyone taking nitro.
I just answered your other post so you will read it too.
The rep for the natto said most people go by the dosage they give on their label. Sometimes one person may decide to take more. The way it acts on the blood vessels she said it really doesn't matter if you take more. I think it's like most meds, keeping a certain level in your system. Most who produce it from what I've seen is two pills (100mg or 2000fu) twice a day. Some take 3. But taking more isn't supposed to be harmful like the prescription. It keeps the excess fibrogen out of the vessels. Too much fibrogen can get stuck in the vessels and the blood cells get trapped and form a clot. The natto eats all the excess fibrogen and keeps the vessels clear. That's how the rep explained it and from what I've read about how natto works she was on the same page. It's too bad more can't be done in the medical community with natto but then natural doesn't make money for the drug or insurance companies. My GP had heard of nattokinase but of course didn't elaborate.
I would be very cautious about accepting what she said about taking more beincg ok. People have had haemorrhagic strokes from taking too much nattokinase. The traditional Japanese diet favoured haemorrhagic strokes over ischaemic ones. Also what she is describing sounds to me more like an anti platelet mechanism. There is another anticogulant that comes from snails - lumbrokinase but I don't know much about it.
Has anyone checked your blood level for this drug?
"Use
To measure plasma apixaban concentration in ng/mL. Although routine monitoring is not needed, there are a number of clinical circumstances in which clinicians want or need to know a patient's apixaban level."
Seems like all your symptoms ought to be a good reason to make sure your blood levels are "appropriate." Kidney or liver problems could affect drug levels. I should think genetics could too.
All the Drs just seem to know to hand out pills with the insurance I have. No questions. No testing for anything regarding metabolism, nutrients. Nothing. Just you have Afib. Take these pills. And see you in 3 months. It's mind boggling to me that is how Drs treat a patient. I asked my GP for a genetics test. I would have had to pay for it myself (borrowed from a relative) and I was told no. And the GP said genetic testing really isn't that conclusive. Just a cop out. Don't want to ruffle the feathers of the insurance company or big pharma to prove their drugs don't work for some people. It's disgusting.
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