Recommendation for Anticoagulant

Hi! This is my first post since around 2014 when I had a successful ablation for afib. Up to about a year ago, my heart has been doing fairly well -- some PACs but no afib that I knew of. Then I had some sessions with a laser detox specialist for insomnia, GERD, and leaky gut. All hell broke loose after that. I became off balance, nauseated at times, lost weight, exhausted, and the list goes on.

So I stopped those treatments and went to a different alternative med chiropractor who prescribed using an electronic pulsing vagus nerve stimulator. It was helping my insomnia, but suddenly after using it twice a day for 19 days, I started feeling weak, light-headed, and my heart was often pounding. So I stopped using it, but my irregular heart beats have continued. I went to the ER and they did a 10 second ECG that showed I was having PACs, but they sent me home without any meds and said to see my cardiologist to get a Holter monitoring done.

That was on March 19, 2023. I have an appointment with my cardiologist tomorrow, April 3, and am wondering which anticoagulant causes the fewest side effects as I'm sure my cardiologist will want to put me on one, since he's suggested it in the past. Since I already have chronic insomnia, I don't want one that will make that worse. I also have low blood sugar at times as my digestion isn't working and I'm not able to take in the nutrients from my food very well.

Meanwhile, I went to my FNP and she said I am hypothyroid as my TSH was at 10. She gave me a very low dose of Levothyroxine at 12.5mg because it too causes me to become jittery and makes my insomnia worse if I take any more than that.

Recently, we bought a Wellue ECG Recorder with AI Analysis so we could monitor my heart for 24 hours a day. After using it for the past three days, it reports that I'm have thousands of PACs (about 10% of my total heart beats), some PVCs, and even some afib.

I am taking a supplement called PeptACE that Dr Russell Blaylock recommends. It is a natural ACE inhibitor that reduces aldosterone levels, which he says reduces fibrosis of the atrium, prevents low potassium, prevents hypertension, improves blood vessel function, decreases the risk of having a stroke, and lowers sympatheric nervous system activity. This product contains nine small peptides extracted from the bonito fish. The dose is one 500mg capsule three times a day with food. He said that his friend took 3 a day and that it stopped 100% of his PACs within 24 hours.

I'm starting out slowly with the PeptACE, and took only 1 the first day, 2 the second day, and hopefully 3 today. So far, my PACs continue in the thousands. I also had only 2 hours sleep last night, when I usually get 4 to 4.5 hours sleep, so it seems to have a negative effect on my sleep. So I'm not sure if I'll be able to keep taking it.

Thanks for your help on suggestions for an anticoagulant with the fewest side effects. I know all of them have issues, but perhaps some of you can tell me about your positive and negative experiences with them.

Nancy M

The DOACs Eliquis and Xarelto come with few or no side effects for most people. Not everyone but most. Pradaxa can cause GI upset with some people but otherwise doesn't come with many side effects. I've not encountered anyone taking the other two DOACs whose names I can't recall offhand so I don't know about those. The one with maximum side effects is warfarin, and unless you have a specific medical need for it, I would steer far away from it.

Personally, Eliquis would always be my first choice because it has proven to be the safest and most effective.

What's going to determine whether you need an anticoagulant isn't the PACs and PVCs and maybe afib. It will be your CHADS-Vasc score. When you do the score, check the box for being male, not female. Do that to remove the point for being female that is no longer counted in the score per the most recent guidelines.

Thanks for your prompt response, Carey. I greatly appreciate your information.

I took the CHAD test and my score would be 2 due to the fact that I am 73 and I would most likely be considered to have vascular disease as I had varicose veins, which were ablated back in 2015. Interesting that there is no point added for having had afib and an ablation for that, unless I'm not reading the test correctly.

I have taken Xarelto before and after my 2014 afib ablation, but the fact that it can cause macular degeneration if taken long term is a concern. But then I read that Eliquis can cause cataracts. I only took Xarelto for about 9 months and my EP said it was fine to go off it six months after my ablation. Of course, I was younger then.

Will post more after my cardiologist visit tomorrow.

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Nancy M
I took the CHAD test and my score would be 2 due to the fact that I am 73 and I would most likely be considered to have vascular disease as I had varicose veins, which were ablated back in 2015. Interesting that there is no point added for having had afib and an ablation for that, unless I'm not reading the test correctly.

I don't believe varicose veins are counted as vascular disease, so you're probably a 1. That makes an anticoagulant probably unnecessary, but if you're experiencing episodes of sustained afib your cardiologist may feel inclined to put you on one anyway.

Having had an ablation does not confer a point and never has. The test assumes you've been diagnosed with afib so there's no points for that.

Just one question: Is your cardiologist an electrophysiologist? (EP) If not, then you need to consider finding one. General cardiologists are sort of the plumbers of the cardiology world while EPs are the electricians. Afib is an electrical problem, not a plumbing problem, and your best advice for afib will be coming from an EP, not a general cardiologist.

“Since I already have chronic insomnia, I don't want one that will make that worse.”

I have chronic insomnia related issues. I don’t feel my Rx for eliquis has contributed to or exacerbated my insomnia.

Thanks, Mark. That is very helpful. Do you have any other side effects from taking Eliquis?

Nancy, this is a belated reply in light that today is your appt, but wanted to add that I've been on Xaelto since 2015 and not had any side effects from it. (I'd not heard the infor about eye concerns with these drugs, and of late, my eyes have been very dry, but I think this is an age/winter home-heat thing).

Thanks, Californiagal. I did go to my appointment day and the doctor prescribed Eliquis. I had taken Xarelto many years ago before and after my 2014 ablation, but have never taken Eliquis. Will see how it goes.

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Nancy M
Thanks, Mark. That is very helpful. Do you have any other side effects from taking Eliquis?

The “we’re all different” appplies but I have had no side effects from eliquis.

Hi Carey,

No, my cardiologist is not an EP. However, I asked him for a referral to our local EP and so I will be making an appointment with him with the idea of getting a watchman so I don't have to continue taking Eliquis for the rest of my life.

The EP is Brett Gidney. He works out of Santa Maria, CA at Marian Hospital. I asked my cardio about Gidney, and he said he does 10 Watchmans a day, is affiliated with UCLA, and teaches other EPs how to do the Watchman procedure. He also said he has more experience with Watchmans than anyone else in the western USA. I know several people who have had ablations done by Gidney, and after 10 years, they are still afib and aflutter-free. They all rave about him.

Meanwhile, my cardiologist has ordered an Event Monitor that I am to wear for 4 weeks. He also prescribed Eliquis 5mg twice a day.

I had Natale implant my watchman. You really need a skilled EP if things go physically south with your anatomy. You may not have a textbook anatomy. My vein from groin to heart had a kink curve. Being as skilled as Natale is, he worked on it without tearing my vein. Once he got to my LAA, he noticed I had a tilted curved long shoulder. Again he knew what to do and did his magic and took a TEE afterwards to make sure it was sealed. At 6 weeks and 6 months it remained sealed.

On the flip side, I was hospitalized and a random EP was assigned to me during the time Natale’s NP was on maternity leave. I too asked how many watchman he has performed. I asked another question-have you torn up any hearts while doing implantations? He honestly replied yes a few and has stopped doing them. So his overall number is meaningless, his iatrogenic record is more important. I wasn’t planning on using anyone but Natale but I was curious with this random EP. Plus ask if your EP if he has anyone on call when he is off. This random dr had nobody with attending privileges at Robles. That’s an important question to ask.

So I would get the best. Dr Natale has an office in Thousand Oaks Ca, but if you have to fly there, fly a bit further to Austin where he has state of the art imaging equipment plus multiple NPs on rotation call so you are always are covered.

Incidentally, if you're looking for an EP with the most Watchman experience, that would be Rodney Horton at Texas Cardiac Arrhythmia Institute. He works with Natale and in fact trained Natale on the Watchman. When Natale did mine in 2018, Natale had done a couple of hundred and Horton had done over 4000. Although Natale was listed as the operator in my report, Horton was also present. I don't know if he's the #1 Watchman guy in the world, but I'm sure he's in the top 10.

Btu keep in mind that a Watchman isn't an ablation. It's a significantly less complex procedure and requires less training. I wouldn't dream of allowing an EP who's done, say, 200 ablations do one on me, but I wouldn't have a problem with an EP who's done 200 Watchmans do one.

For anyone interested in CBT-I for Insomnia..Cognitive Behavioral therapy for Insomnia. I paid one hosptial to get help in this area (and it did).. but then found this study which legit paid me to do their program .. and it was more of a refresher for me. But I highly recommend checking into it if you have chronic insomnia. I still take med to sleep sometimes - study can be done when on or off (if the study is still running). If you have any questions let me know but CBT-I is a non-medicine alternative that is highly rated. It was initially introduced to me by my sleep doctor. (This isn't to take the place of any apnea treatments by the way.. specifically for insomnia with or without apnea issues)

[henryford.co1.qualtrics.com]

Rodney Horton Is a wizard on repairing watchman’s that leak. I’ve watched many of his twitter’s videos. Very interesting videos. One he added a second watchman to Siamese two together to create a perfect seal. I follow him on twitter to watch his posts. Good stuff.

Thanks for everyone's help.

Yes, Jackie Burgess told me that Natale has an works out of Thousand Oaks. That's about a 1.5 hour drive from where I live, but I'm sure Natale is booked solid and I wouldn't be able to get in to see him for a long time. At this point, I haven't done the Event Monitor yet so don't know if I need a second ablation, but I do want to get a watchman so I don't have to be on Eliquis for life.

Will look into the link for the Cognitive Behavior Therapy, but I've tried similar things before and it didn't help. My current alternative med doctor says my autonomic nervous system is out of balance in that I have too much sympathetic nervous system working and not enough parasympathetic, causing a "fight or flight" situation where I can't calm down enough to nap or sleep. That's why I was using the Truvaga, a vagus nerve stimulator device to try to balance these systems. But that is what seems to have triggered my current PACs and afib. I cannot take any form of sleeping pills as I've tried them in the past and they don't work. I get a paradoxical reaction to them.

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Nancy M
Thanks for everyone's help.


Will look into the link for the Cognitive Behavior Therapy, but I've tried similar things before and it didn't help. .

Just FYi.. it isn't just CBT but CBT-I .. for Insomnia. no pressure. just mentioning because it is the first thing in over 10 years that really helped. You can get some good books from the library to check it out also if you want.

My local cardiologist was very interested in determining if I should be on Eliquis after having my LAA closure during a Mini Maze 16 years ago. He had me do a cardiac CT with dye ( I was not too happy about that dye business). I am somewhat of a novelty in my local area having had a closure so long ago when all this was fairly new. He told me that several Docs took a look at my results and said that my closure was complete, no leaks. He told me that I could opt for - baby aspirin, 1/2 dose of Eliquis, Plavix, or nothing at all. He said that there is not enough data at this point to definitively determine whether any closure options are a guarantee of stoke prevention for life. So now it is my personal choice. ChadVasc score of 1 - based on age in a few years according to the scoring I would be a 2.

"He told me that I could opt for - baby aspirin, 1/2 dose of Eliquis, Plavix, or nothing at all. He said that there is not enough data at this point to definitively determine whether any closure options are a guarantee of stoke prevention for life. So now it is my personal choice. ChadVasc score of 1 - based on age in a few years according to the scoring I would be a 2."

I've read that baby aspirin is no longer recommended. I don't know anything about Plavix or how it differs from Eliquis. My cardiologist did mention something about my having to take Plavix after having a watchman done, but I haven't even received a call from the EP yet for an appointment, so don't know what he would say.

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Nancy M
I've read that baby aspirin is no longer recommended. I don't know anything about Plavix or how it differs from Eliquis. My cardiologist did mention something about my having to take Plavix after having a watchman done, but I haven't even received a call from the EP yet for an appointment, so don't know what he would say.

Aspirin is no longer recommended for afib, but it's definitely used with the Watchman (also artificial valves and various other things).

Plavix is an antiplatelet drug, much like aspirin. The FDA protocol is an anticoagulant plus an antiplatelet for 6 weeks. For example, Plavix or aspirin, and Eliquis. You then undergo a TEE, and if the Watchman is appropriately placed, leak free, and there are no clots on it, you stop the anticoagulant and remain on aspirin (81-100 mg) plus Plavix until 6 months, at which time you stop the Plavix and remain on aspirin for life.

However, many EPs don't follow this protocol. The protocol Natale had me follow was aspirin plus Eliquis for 6 weeks, then the TEE, then stop the Plavix and choose either aspirin, 1/2-dose Eliquis, or nothing. I went with the 1/2-dose Eliquis.

Thanks, Carey. This is very helpful information. What is a Tee? How is that procedure done?

Transesophageal Echocardiogram. Your heart and your left atrium in particular lie right against your esophagus so putting an ultrasound wand down your throat gives them an excellent way of seeing your heart. The typical procedure would they start an IV, give you a light dose of anesthesia (probably propofol) and then slide an ultrasound probe down your throat. It only takes about 15 minutes then they let the anesthesia wear off and you're done in under an hour.

Some doctors don't like to use anesthesia so they have you gargle some stuff that numbs your throat. and do it with you wide awake. I would tell anyone who wants to do one that way to go pound sand.

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Carey
Some doctors don't like to use anesthesia so they have you gargle some stuff that numbs your throat. and do it with you wide awake. I would tell anyone who wants to do one that way to go pound sand.

I had one done that way—agree, should have told them to go pound sand!

Thanks, Carey. I'll definitely be sure to get an anesthesia if I decide to do this. Getting a watchman is far more complicated than I thought, so I'm not sure if I want it done. If I need to be on a 1/2 dose of Eliquis after the ablation anyway, or something like it, I may reconsider.

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Nancy M
If I need to be on a 1/2 dose of Eliquis after the ablation anyway, or something like it, I may reconsider.

It's your choice. In Europe it's long been standard practice not to continue anything, neither aspirin nor an anticoagulant. I'm taking a half-dose of Eliquis, but that's not because of the Watchman. I take it for the same reason many people take a daily low-dose aspirin.

Good to know, Carey. Guess I'll see what the EP, Dr Gidney, recommends and evaluate it then.

Whaaaa? I have 2 mechanical heart valves and have taken over 5.0mg warfarin daily since I was 31. (am 53 now) I’ve never had side effects from it. Ever. And I’m on amiodarone at the same time.
I think what they list as side effects is mostly only applicable if you don’t do continuous monitoring properly or follow a consistent diet. If you don’t either get your blood draws or do at home monitoring w a PCP and a service like Coaguchek/Roche/Biotel heart/Phillips M then yes, warfarin management can be dangerous. I’ve stroked once because a PCP refused to listen to my medical hx and way overadjusted my meds.
If warfarin is suggested as an option, I would recommend investigating your management options and what diet restrictions you would need to follow or manage. Thats the trickiest part imo. All in all I do think there are less high maintenance drugs than warfarin for anti-coagulation but as for side effects, nah.... not at all. (And I’m close to 100 pds w high metabolism and high sensitivity so if there was anything you might feel from this drug, I’d have felt it by now.)

AL777s, you have on amiodarone for how long? Twenty-plus years?!?!? Wow, that flies in the face of all that I have been told and read. One internist told me that it can't be taken safely after about 8-10 years of continuous use due to toxicity. It was all I could think about for the eight weeks I was on it after my first ablation.

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AL777s
All in all I do think there are less high maintenance drugs than warfarin for anti-coagulation but as for side effects, nah.... not at all.

I'm afraid you're wrong about that. Many people take it for years without problem, but just because you've escaped problems doesn't mean everyone will (or that you always will). Warfarin comes with a very long list of very serious side effects (some fatal, some life altering) plus many drug, food, and supplements interactions. Most of these side effects can't be avoided with just diet consistency or any type of management practices.

If you doubt that, go to the professional section of drugs.com and scroll down to the section labeled "Cautions for Warfarin." It goes on for pages. Keep reading until you get to the pharmacokinetics section.

LOL God no. I just was diagnosed with afib recently... so no, I haven’t been taking amiodarone for that long. However, I have been taking warfarin since 2001, so if any negative side effects were going to show for that drug specifically - I’d have experienced them by now. There may be other folks w greater sensitivities due to different chemistry etc but I think its pretty rare given how many other people I know from other forums w similar surgeries who take it. My point is even amiodarone has an anticoagulating effect and within the time I have been taking it, there have still been no harsh side effects from the warfarin. You’d think if there was going to be, it’d have materialized by now since it has come close to its plateau and is such a harsh drug itself. All that was needed was a dosage adjustment of 50% which I decreased gradually as I titrated up to 175 mg of amio.

Thanks for the reference Carey but I’m super familiar already w warfarin as a patient, as a person w Marfans who knows other persons w this connective tissue syndrome (who also need to take warfarin) and as a long time medical coder. Heart surgery is pretty common amongst our lot and pharmacology was required for my degree in health info mngmnt. I think maybe you feel I disagree w you that its a drug you need to careful with, which I don’t. You definitely do need to be careful, educate yourself and take your responsibilities as a warfarin patient seriously. That I absolutely agree with... However, the long list of side effects in this reference are mainly about when other conditions exist (pregnancy, hepatic impairment etc). As far as meddies go, warfarin isn’t as bad as some *if* the patient educates themselves. Not everyone has the time or desire and that’s completely understandable. Life’s already messy enough.

Yes, most of the complications involve either people who don't manage themselves well or have comorbidities, but warfarin is still a drug with a longer list of serious side effects and interactions than most of the drugs most people take. I wouldn't blow it off as a nothing as long as you manage yourself well.

And since you may know more about this than me, have there been or are there any planned trials looking at DOACs for mechanical heart valve patients? I've long wondered why the DOAC manufacturers haven't pursued that market but never really looked into it.

Speaking of side effects, I have been on Eliquis for about a week now and I've suddenly developed a purple coloration on my knuckles, and about an inch above and below the knuckles on both hands. I've had some numbness in my little finger of my left hand and my index finger of my right hand. And my toes get numb and cold as well. This happens off and on when I'm cold. And why am I cold when it's 64 degrees? Something is very strange!

I showed my purple hands to a pharmacist yesterday, and he said to call my cardiologist on Monday, which I plan to do.

In doing a search online about "blue hands and toes and Eliquis", it reported that about 15 people out of a study of 142,000 people have this side effect, along with numbness of the toes and fingers.

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Nancy M
Speaking of side effects, I have been on Eliquis for about a week now and I've suddenly developed a purple coloration on my knuckles, and about an inch above and below the knuckles on both hands.

Are you sure they're not just bruises? Many people find they bruise more easily on Eliquis (or any anticoagulant).

In any case, if it ends up being a problem you can try Xarelto instead. There's also Pradaxa, but it's not recommended for people over 75 (I don't recall that you ever mentioned your age). And there are still two more, but they're unusual, at least in the US; have yet to encounter anyone taking them.

Hi Carey,

It's definitely not bruises because the purple and the numbness in the fingers go away when my hands warm up. However, I've never had this problem when the temp is in the 60's like it is now, so I'm wondering if the Eliquis is making my blood thinner, thus causing the problem? I'm currently 73. I didn't have this issue when I was on Xeralto, but that was back in 2014 before and after my ablation surgery. My body may be different now. Other than this purple/numbness issue, I seem to be doing okay on the Eliquis.

Nancy - just found this... FYI... ?? Scroll down thru...lots of 'associated' listings....

Jackie

Eliquis and Skin discoloration - bluish - a phase IV clinical study of FDA data
Summary:

Skin discoloration - bluish is found among people who take Eliquis, especially for people who are female, 60+ old, have been taking the drug for < 1 month.

The phase IV clinical study analyzes which people take Eliquis and have Skin discoloration - bluish. It is created by eHealthMe based on reports of 142,078 people who have side effects when taking Eliquis from the FDA, and is updated regularly. You can use the study as a second opinion to make health care decisions.

Phase IV trials are used to detect adverse drug outcomes and monitor drug effectiveness in the real world. With medical big data and AI algorithms, eHealthMe is running millions of phase IV trials and makes the results available to the public. Our original studies have been referenced on 600+ medical publications including The Lancet, Mayo Clinic Proceedings, and Nature.

[www.ehealthme.com]