Welcome to the Afibber’s Forum
Serving Afibbers worldwide since 1999
Moderated by Shannon and Carey


Afibbers Home Afibbers Forum General Health Forum
Afib Resources Afib Database Vitamin Shop


Welcome! Log In Create A New Profile

Advanced

blood thinners

Posted by Elizabeth 
blood thinners
March 02, 2024 04:24PM
[www.medsnews.com]

Pradaxa has had 1,000 fatalities, [www.classaction.com]

I had AF for about 20 years, I would get episodes of AF not to often in the early years then started getting them more often, but I always went back into NsR. I have always had thyroid problems during this time, however I became hyper again and went into permanent AF about 3 years ago. During those 20 years I never took a blood thinner, since going into permanent AF I take xarelto everyday, the drug is supposed to protect against strokes, well I got a stroke last year. These new blood thinners have a lot of hype but xarelto did not protect me. There have been lawsuits against Eliquis, Pradaxa and Xarelto. Hopefully AF can be taken care of without having to take these blood thinners.

Liz
Re: blood thinners
March 02, 2024 04:44PM
Elizabeth
I have had a Fib for about 3 years now and for the first 2 years refused to take blood thinners. The A Fib got worse last spring and I broke down and went on Apixaban. The reason was my Dad had 2 strokes near the end of his life and I did not want to burden my wife with whst I saw from my Mom and Dad.
Once I have my ablation this spring / summer if it is a success I will consider not taking the thinner again as I hate it.
Re: blood thinners
March 02, 2024 04:46PM
There have been deaths and lawsuits associated with every drug you can name. There are huge law firms whose only line of business is recruiting people to join class action lawsuits against drug companies. Like, for example, the company you linked to. Lawsuits mean nothing, and class action suits do nothing except enrich lawyers. Nobody else gets more than pocket change from them.

The data are crystal clear. If your CHADS-Vasc score is > 1, an anticoagulant will significantly reduce your risk of stroke. Fewer people on anticoagulants have strokes and heart attacks than people who aren't on anticoagulants. That's established fact.

But I went 20 years taking nothing and had no strokes, and then had a stroke while I was on Xarelto. Yes, I said they reduce risk, not prevent it completely. And yes, plenty of people get lucky and get by on nothing without having a stroke. Again, the important words are risk reduction. No drug prevents strokes 100%, and probably never will. Like all of medicine, it's all about probabilities, not certainties. There are virtually no certainties in medicine.
Re: blood thinners
March 02, 2024 04:48PM
Quote
calvin
Once I have my ablation this spring / summer if it is a success I will consider not taking the thinner again as I hate it.

What's your CHADS-Vasc score?
Re: blood thinners
March 02, 2024 05:10PM
Quote
Carey

Once I have my ablation this spring / summer if it is a success I will consider not taking the thinner again as I hate it.

What's your CHADS-Vasc score?

According to that score it is a 2, I will talk about this with my EP
Thanks.
Re: blood thinners
March 02, 2024 06:41PM
Quote
calvin
According to that score it is a 2, I will talk about this with my EP
Thanks.

Please do. It's probably not a good idea for you to go off the anticoagulant.

You say you hate being on it. What is it you hate so much? I'm asking out of genuine curiosity because I hear this from people all the time and I never hear reasons why they hate it so much. Most of the DOACs have few if any side effects for most people.
Re: blood thinners
March 02, 2024 08:55PM
Quote
Carey

According to that score it is a 2, I will talk about this with my EP
Thanks.

Please do. It's probably not a good idea for you to go off the anticoagulant.

You say you hate being on it. What is it you hate so much? I'm asking out of genuine curiosity because I hear this from people all the time and I never hear reasons why they hate it so much. Most of the DOACs have few if any side effects for most people.
I am a wooden boat builder and bleeding is almost a daily experience for me, even small hits on my arms , legs and hands produce huge under the skin bruises and bleeding.
Re: blood thinners
March 03, 2024 07:16AM
I had Afib for about 2 years prior to taking blood thinners. It was paroxysmal Afib initially but as I had a mitral valve that had worse regurgitation, the Afib became persistent. My EP said my Chads-Vasc score was 1 but he would HIGHLY suggest taking a blood thinner. I took his advice and have been taking Eliquis ever since. Other then some extra bruising here or there I have no issues with it at all. And as Carey stated, no medications will correct something 100% but a good anticoagulant will be much safer then a baby aspirin or nothing.



Edited 4 time(s). Last edit at 03/07/2024 12:33AM by cornerbax.
Ken
Re: blood thinners
March 03, 2024 10:32AM
About 9 months ago, I found that I had a bilateral pulmonary embolism. No source could be found, and I went on Eliquis. Because of this and that I have had two successful afib ablations in my 21-year afib history, my Dr. suggested that staying on Eliquis forever was a good idea. So, that's where I am. Some bruising when I bash the back of my hands on doorknobs, etc. but no other issues. A stroke, I will do everything possible to avoid.
Re: blood thinners
March 03, 2024 12:04PM
Quote
Ken
A stroke, I will do everything possible to avoid.

Agreed. I'll take all the bruising the world can dish out over a single "small" stroke. And a major one? Well, if you survive your life as you know it is over.
Re: blood thinners
March 03, 2024 05:51PM
I’m a chad 5 and even with my successful sealed watchman, dr Natale suggested I stay on 2.5 BID Eliquis for the rest of my life. I fall and stumbled but nothing as bad as a stroke if I stopped . A bruise is temporary, a stroke may not be
Re: blood thinners
March 03, 2024 11:16PM
I am not telling anyone to stop doing what they are doing. I am only stating what has happened to me, Xarelto did not protect me completely, these new blood thinners have been fast loaded into our life. AF is exploding in our country, hopefully AF can be helped with some of the new technology that is being explored.
Re: blood thinners
March 04, 2024 11:51AM
Quote
Elizabeth
AF is exploding in our country, hopefully AF can be helped with some of the new technology that is being explored

Let’s hope that there will continue to be progress in treating Afib. Though, since research is showing that rather than Afib directly causing strokes, it is likely that they both have a common cause (changes in the tissue of the heart) simply successfully treating Afib would still leave you at risk for strokes unless the common underlying can also be treated.
Re: blood thinners
March 05, 2024 02:32PM
Quote
calvin
Once I have my ablation this spring / summer if it is a success I will consider not taking the thinner again as I hate it.

That was a decision I struggled with as well.

If you're not already, definitely follow the multi-center, REACT-AF trial. The premise tested is that taking daily thinners based on CHADS alone, may be putting many at an unnecessary bleed risk and that other factors, namely afib frequency and duration, may be what matters most.

Using a specially rigged Apple Watch, one cohort will continue with daily thinners, while the other will only take a thinner if a Watch detected episode lasts over 3 hours and then for only 30 days. Both Cohorts are CHADS 1-4.

For those with infrequent and/or short afib episodes, easy to see how this would significantly cut down the exposure to the bleed risk from thinners.

Jim



Edited 1 time(s). Last edit at 03/05/2024 02:34PM by mjamesone.
Re: blood thinners
March 05, 2024 10:36PM
Quote
mjamesone

Once I have my ablation this spring / summer if it is a success I will consider not taking the thinner again as I hate it.

That was a decision I struggled with as well.

If you're not already, definitely follow the multi-center, REACT-AF trial. The premise tested is that taking daily thinners based on CHADS alone, may be putting many at an unnecessary bleed risk and that other factors, namely afib frequency and duration, may be what matters most.

Using a specially rigged Apple Watch, one cohort will continue with daily thinners, while the other will only take a thinner if a Watch detected episode lasts over 3 hours and then for only 30 days. Both Cohorts are CHADS 1-4.

For those with infrequent and/or short afib episodes, easy to see how this would significantly cut down the exposure to the bleed risk from thinners.

Jim
Thanks for that REACT AF trail info, looks interesting.
Re: blood thinners
March 06, 2024 09:29AM
Calvin, this video proceeds enrollment in the trial however it gives you a pretty good idea of the thinking behind it.


[youtu.be]
Ken
Re: blood thinners
March 06, 2024 10:02AM
My stroke concerns come from observing and knowing several members of my (over 55 community - 1300 homes). I am in the fitness center 2-3 days a week and I know of 4 guys that have had strokes and have limited mobility. They are doing their best to gain strength, but I see little if any benefit given their efforts other than maintaining the status quo. Although I don't know where they would be if they weren't making the effort to gain strength. I don't want to be in the same boat!!!!!!

What bleeding risks I could encounter from taking Eliquis are well justified in my mind, knowing and observing the impact from a stroke. I wonder how many more in my community that have had strokes that I never see?

My life of activity, I will do everything possible to maintain it as long as I am alive. Scuba diving last Nov. in Jamaica, skiing in Colorado in Jan., a week in Antartica in Feb, heading to Greenland and Iceland in June. I turn 79 in May.
Re: blood thinners
March 06, 2024 10:34AM
Ken,

Strokes can be terrible. But I also know through a friend of two people who had debilitating bleeds last year from thinners. One died after getting hitting in the head with a racquet and the other had to be institutionalized after hitting their head after a fall. Last summer I cut my hand with a chain saw and fortunately was not on thinners at the time. In the fall, while on thinners, I hit my head hard on a metal staircase, where protocol dictated I go to the Emergency Room. I used to be an avid motorcycle rider and now am hesitant when on thinners. I like the premise of REACT-AF, which questions why someone once diagnosed with afib -- but who currently has either no, or only occasional episodes -- should be anticoagulated the same, as someone in persistent afib. Hopefully, REACT-AF will give some answers.

Jim
Ken
Re: blood thinners
March 06, 2024 11:31AM
If I hadn't been confronted with the pulmonary embolism (no source identified), I would not be on a blood thinner. But with my history of afib and the PE, I had to decide which way to go, and that is with the blood thinner. Eliquis is reported to be the safest. When I have had cuts or bleeding, I see no difference in coagulation time than when I was not on a thinner. But, I have not had any serious bleeds.
Re: blood thinners
March 06, 2024 12:10PM
Quote
Ken
If I hadn't been confronted with the pulmonary embolism (no source identified), I would not be on a blood thinner

That makes sense, and I believe you would also be disqualified from REACT-AF since you have reasons other than afib to be on a thinner..
Re: blood thinners
March 06, 2024 12:26PM
Quote
mjamesone
Ken,

Strokes can be terrible. But I also know through a friend of two people who had debilitating bleeds last year from thinners. One died after getting hitting in the head with a racquet and the other had to be institutionalized after hitting their head after a fall. Last summer I cut my hand with a chain saw and fortunately was not on thinners at the time. In the fall, while on thinners, I hit my head hard on a metal staircase, where protocol dictated I go to the Emergency Room. I used to be an avid motorcycle rider and now am hesitant when on thinners. I like the premise of REACT-AF, which questions why someone once diagnosed with afib -- but who currently has either no, or only occasional episodes -- should be anticoagulated the same, as someone in persistent afib. Hopefully, REACT-AF will give some answers.

Jim
Jim
I see the part where you are a motorcyclist. I can not give up my ridding. Last June I rode to Alaska for 3 weeks and carried some dressings that promote clotting. I told my partner that they were in my tank bag and to use them if I needed them. I know its not the best but I chose to not stop riding as its been my life for the last 12 years. I have ridden my moto in 43 countries so I guess you can say it is a big part of my life.
Cal
Re: blood thinners
March 06, 2024 01:37PM
I was hardcore like yourself, so I get how important riding is. A good helmet, proper gear and a first aide kit like you described can go a long way. I may go back to riding some day -- thinners or no thinners -- if other health issues cooperate, but I think my Iron Butt rides are a thing of the past.

Jim



Edited 1 time(s). Last edit at 03/06/2024 01:38PM by mjamesone.
Re: blood thinners
March 06, 2024 02:45PM
Quote
mjamesone
I was hardcore like yourself, so I get how important riding is. A good helmet, proper gear and a first aide kit like you described can go a long way. I may go back to riding some day -- thinners or no thinners -- if other health issues cooperate, but I think my Iron Butt rides are a thing of the past.

Jim
Just to add to this conversation. I had a freak accident in July of 2022, I was riding a lonely gravel road in the NWT Canada when my rear spokes started breaking and the last thing I remember is standing beside the bike in the middle of the road. I was in full gear top to bottom and the gear stopped any road rash and skin bleeding. 2 days later I made it to a hospital and had a broken hand and elbow, 2 neck fractures and 2 lower back fractures, they were surprised I was able to walk in under my own power. It took a year to recover and be back to 95% .......except for A Fib LOL
The purpose of this story is to show even on blood thinners I chose to ride and I am still here. My gear prevented any bruising which was a blessing.
Re: blood thinners
March 06, 2024 03:44PM
I ride a road bike and occasionally a mountain bike, but I'm pretty mellow about the mountain biking and mainly just use it to go places a road bike can't go. I've never curtailed my activities because of anticoagulants. I wear a good helmet religiously because head injuries are really the only kind of bleeding to be concerned about. Everything else will stop on its own or can be stopped.
Re: blood thinners
April 07, 2024 03:47AM
I've been on Xarelto for 10 years now, never bruise or bleed too much no matter how hard I hit my body or how deep I get cut.

McHale
Sorry, only registered users may post in this forum.

Click here to login