A FIB

I've read a few posts concerning afib. About a year ago, I was told that I had afib. I had a Medtronic dual lead PM. I just had it replaced on March 3, with a single lead Boston Scientific PM. When I met with my cardiologist, I asked him about the afib, he said that I am in afib all the time. Here's my question, I take Xarelto. It is very expensive, I just paid well over $400 for a 90 day supply. That covered my deductible, but both my husband and I are on it. I've been thinking about taking coumadin instead. Is it an equal to the other blood thinners, except for blood tests, or is there another med that would not be as costly? I am 73, I do get tired easily, but feel a lot better after the new PM implant. I've accepted that I won't be able to do a lot of things that many of you do, however, I just want to enjoy the time that I have left. I appreciate all that you share. Thanks.

17 Comments

Coumadin is a proven bloodthinner

by xbvg10 - 2015-03-08 07:03:20

that I've used for over 3 years. Monthly testing is not a great burden. I also have Afib and a PM.

Coumadin

by Roys - 2015-03-08 07:03:27

Hi
You can get a INR Monitor and do your blood test at home.
The best one is a CoaguCheck XS, and is just as reliable as a Lab check. Cost $700 in Australia.
Cheers Roy

Why not Coumadin?

by donr - 2015-03-08 07:03:45

There are millions of people taking it successfully/

Personally, I feel like it is superior to all the others for one simple reason - well, actually two simple reasons:

1) It's about as cheap as you can get, It's been around so long that even dirt pays it appropriate respect!
2) Coumadin is nearly instantly reverse able. None of the others are. You need emergency surgery - one shot in the butt from a syringe the size of a bicycle pump w/ a needle the size of a 20 penny nail & you are set to go. Actually, I exhibited my author's license on describing the syringe & needle. I don't remember how big it was the night they used it on me - I was drunk on Morphine following a car accident & didn't really care about needle size - but it did work.
3) I have zero side effects from it. Some people do.
4) Ok, so it takes blood testing periodically. If you don't mind the periodic poke, it's no big deal.
5) So you have to remember to take the daily pill. I already tai a fist full - what's one more.

6) It works for me. I have no problems w/it. Some people have a psychological hang up about it - I don't. I've been on it since the fall of 2002. I am now a "Self-tester." I have a small machine like diabetics. Test & manage myself w/ the help of a nurse in my Cardio's office. I test as I feel I need to, report the results to Good Ol' Denise & we collectively figure out what I'll do to correct my out of range INR. Denise is a nice lady. She always calls me back to acknowledge my reports on her answering machine..

Hope I've helped you.

Donr

yes, you all helped

by sagehen - 2015-03-08 08:03:13

Thanks, you have helped me make my decision. I have researched and talked to my cardiologist about taking coumadin. He said I could switch. I just needed to hear from others who take it. I am diabetic, so pricking my finger is nothing new. Thanks again for taking the time to answer.

A Caveat

by Theknotguy - 2015-03-08 11:03:09

Wish I knew about this site while I was in the pre-PM stages of treating afib. If so, I would have known a lot more about taking care of myself while on Coumadin. I call it rat poison.

The doctor I had was more interested in watching the numbers on his chart than taking care of me. The ability to check my own numbers was out of the question.

Consequently the doctor's would watch his numbers and when he was satisfied, I'd start bleeding internally. I'd bleed so much I'd end up in the hospital from blood loss. This happened seven times. I don't know who was more stubborn the doctor or myself.

In addition to the internal bleeding, the coumadin caused a weird rash on my skin which the doctor dismissed.

I also got into the situation where I'd get a small cut, put on a band-aid to stop the bleeding, then have two bleeding spots when I took off the band-aid. That would require two more band-aids to stop the bleeding and when I took them off, I'd end up with four more bleeding spots. On and on. All because of the side effects of Coumadin.

The final straw was when I started bleeding internally. Noticed the symptoms, got off the coumadin, then went into afib which gave me a blood clot in the heart. I hit the floor like a stone and ended up in the hospital again - on coumadin.

I'm on Apixiban / Eliquis now with no problems. I refuse to go on coumadin. You don't need the blood tests, the rash has gone away, and I can use a band-aid without any problems. No side effects of which I am aware, but a drug that is safe for one person isn't for another. However, Eliquis may be as expensive as Xalerto.

I won't argue with your decision about coumadin. I would strongly suggest you do like DonR and make sure you have the home test kit. If you can't get the home test kit, I'd reconsider using coumadin.

I know that people have been on coumadin and have been on it for years. Yes it's cheap and effective. I write this so you are aware there may be negative side effects.

thanks knot guy

by sagehen - 2015-03-08 11:03:35

Thanks for your info. I appreciate all of the replies. I have a lot to think about. I think that I now can talk to the Dr and know what to ask. I will ask about the home test kit.

Xeralto

by Scout - 2015-03-09 02:03:37

I have been on Xeralto since January of 2014 when I had my pacemaker put in. I am in the Xeralto discount club since then and it is next to nothing or nothing for it - I originally paid $80.00 but since that first script it has been a few dollars or nothing. Actually I am on so many scripts - 7 - that I am pretty sure the Xeralto doesn't cost anything. The only script I am paying for is the Livalo, but honestly i have more to think about these days besides how much these drugs cost. Thank you and I hope you feel well and thank you for having this club.

Coumadin

by golden_snitch - 2015-03-09 02:03:59

Hi!

I was on something like Coumadin (the German equivalent) for about eight years, without any side effects. While I was on it, I did INR home monitoring with a Coagucheck XS. In Germany the insurance has to cover this, if you have to be on Coumadin for longer than one or two years. Home monitoring worked great, I was always in my INR range. And, yes, Coumadin is cheap.

However, I do not agree with the second advantage that DonR mentioned, that Coumadin is nearly instantly reversible. I know his story, and I'm glad that it worked in his particular case, but ask any cardio or neurosurgeon etc., and they will tell you that a simple Vitamin K shot does not many any difference when you suffer a major bleeding from some kind of accident. Have heard several expert talks on this issue, but never ever someone who shared Don's opinion or told a story like Don's.

But there are alternatives to Vitamin K that can be given in an emergency situation like this (plasma, clotting factors) and those will also work in patients who are on the new blood thinning drugs. They are no special antidotes, though; at the moment the industry is working on antidotes for the new oral anticoagulants, and Boehringer Ingelheim has actually submitted something to the FDA recently to get fast track approval.

I have switched to Eliquis (Apixaban) a year ago. Not because I did no longer tolerate Coumadin, but simply because it's a little easier to handle. And since I do not have to care about costs, because insurance covers it all, costs were no reason for me to stay on Coumadin. If I had to pay for it, I would definitely have stayed on Coumadin, though. The new stuff is not superior to Coumadin, just, like I said, easier to handle.

Best wishes!

Coumadin

by IAN MC - 2015-03-09 05:03:56

It seems to me that no matter what blood-thinner you take, they all carry the risk of bleeds particularly when you need emergency surgery.

Surgeons are scared stiff of going in with a scalpel if the patient's INR is above 2.0 ( or even 1.5 for high risk sites ).

There are now compounds around which are derived from human plasma and contain clotting factors ; these can give almost instant reversal of the warfarin effect whereas Vitamin K takes at least 4 hrs before it works. So I think both Don and Inga are correct, depending on which "antidote" you are referring to.

interestingly, the surgeons at my local hospital are still very anti the newer blood-thinners because " they know where they are with Coumadin " and long-standing protocols are in place.

It is difficult to justify the huge price differential of agents like Xarelto /Eliquis compared to Coumadin. You pay a lot more money for some convenience but the overall risks are the same ( unless , like Theknotguy, you have side-effects problems with warfarin but this is rare ! )

Fortunately we don't have to pay for drugs in the UK , if we did the huge price difference would definitely swing me towards Coumadin / warfarin

Ian

Try another pharmacy plan

by PJinSC - 2015-03-09 10:03:11

I did Coumadin for 10 years. Hated it. Several reactions started developing, and they never could get me stabilized. I was taking 15mg daily. Went to Pradaxa for a year, but it was expensive and I had bad heartburn and sleep loss. Recently went to Xarelto. No heartburn, and better sleep. No side effects noticed yet. Was paying $65 per month on our medical plan, and now that I am on Medicare, signed up for Part D with SilverScript (CVS pharmacy). They will do three months, which the other insurance would not do. Just paid $85 for three months! Yay!

Disclaimer: I am not a representative of CVS or SilverScript pharmacy plan. I like to think of myself as a smart shopper.

PJ

Donr's take on bleeding when on Coumadin

by donr - 2015-03-09 11:03:42

Inga & I have talked about this before. Here's my rationale for coumadin & bleeding:

If I get a minor cut at my normal INR level - 2.0 - 3.0 - it's a nothing event, like cutting myself shaving or a minor cut finger.

If I get a mid-sized cut - say a bad gash from a knife or piece of broken glass, It becomes a bit more than a nuisance & requires longer pressure on the open wound to have it close up & stay closed. War story alert: About three days into Coumadin I was working in the attic installing a new electric light fixture. I managed to break the porcelain fixture & cut the tip of my thumb fairly deeply. It started bleeding like a stuck pig so I did the normal reaction & grabbed the cut between the thumb & index finger of the other hand. Unfortunately, when I did that, I reached around a 2X4 piece of the house structure. So there I sat, arms wrapped around the house, unwilling to let go of the thumb, waiting till I thought it would be clotted up. My wife was sitting there talking to me for thirty minutes awaiting the great clotting event.

If I get a severe cut - like hitting a vein or artery, coumadin makes NO difference - I'm gonna bleed anyway & will need professional assistance. I don't concern myself w/ those for that reason. Neither a vein nor artery will clot by themselves & a higher INR will not make any difference in the flow out of them. I just checked w/ #2 daughter, an ER Doc, & she agreed w/ me that if I came in to see her, she would not care till after the fact what my INR was - it would not affect bleeding while the vessel was opened, But would make a difference after she got it sewn up & the bleeding reduced to whatever oozed out.

Internal bleeding is a different colored horse. I have no ability to help myself when I bleed internally - that ALWAYS requires professional assistance.

I must be lucky on the Vitamin K bit. I can eat a healthy serving of steamed spinach & drop my INR by a full point w/i 24 hours.

Surgeon's opinions on safe INR's for cutting us open vary greatly. I've heard them all the way from 2.0 down to 1.3. It must depend on where they are going to cut you.

To follow up on IAN's comment about new meds for controlling bleeding - Uncle Sam's Army has a new pair of meds that stop open bleeding quite rapidly. One is based on shrimp scales/shells & is called chitin or something similar. I've recently read of a powder that is available that can be poured/dumped/whatever into an open, badly bleeding wound & it coagulates up almost immediately.

There is hope.

Meanwhile, we can keep on discussing coumadin merits/demerits.

Don

powder in a can

by sagehen - 2015-03-10 12:03:57

Don, when we had cows and other animals, we always kept a powder in a can, called blood stop. We used it on us if there was serious bleeding. I had forgotten about it until you mentioned it. I'll do some checking and see what I can find out about it. We're all on blood thinners and it might be something to keep on hand for emergencies.

We have a powder....

by donr - 2015-03-11 02:03:35

....that we use on dog's toenails if we cut into the blood supply inadvertently while cutting them. Dog's nails can really bleed up a storm so you dip the toe in the can of powder & it coagulates rather fast . Have no idea what the stuff is.

Donr

be prepared

by sagehen - 2015-03-11 06:03:41

I typed in powdered blood stop and several different brands came up a can was $5 or less. I would only keep it handy for us. We live in a county in eastern Oregon that is a little over 10,000 square miles. Should a person be in the outback hunting, fishing, or just dinging around and get hurt, we need to be prepared. It could be over two hours before help could arrive. When we were a little younger, we were both EMT's and even though we aren't now, we try to be prepared. I may be older now and tired all the time, (I think it's the Afib) I still plan to live my life. I like to enjoy life and as another put in a post somewhere else, I am NOT the walking dead. I am very grateful for each day that I have. Now I plan to LIVE my life as another sweet person put it!

Good Discussion and Some Thoughts

by PJinSC - 2015-03-11 09:03:02

I recall a powder my Dad kept in the barn for stopping blood on the animals and sometimes on one of his wild human animals. Some kind of astringent. There are astringent stick for stopping razor cuts from shaving, but since I stopped using blade razors from the time I started Coumadin, the one I had deteriorated and I tossed it. I will need to search for it.

Has anyone experienced different scarring from when on Coumadin to another thinner? I have. I am pretty rough on myself, and it seemed like any little scratch or cut while I was taking Coumadin (10 years) left a scar. With Pradaxa and Xarelto, the cuts disappear. Just an observation.

Also need to check out the Xarelto club. Anything to save $$$.

PJ

Xarelto Discount Card and Blood Stopper Powder

by PJinSC - 2015-03-14 02:03:11

I did some searching for the Xarelto discount card, and it only applies if you have commercial insurance, not Medicare or any other government plan.

Found this at
http://www.first-aid-product.com/industrial/blood-stopper.htm

Blood Stoppers - QuickClot, KytoStat, and WoundSeal (formerly QR Powder)

Quik Clot® - Quikclot is a chemically inert material in a mesh bag that speeds coagulation of blood, resulting in a stable clot that stops bleeding

Kytostat by HemCon® Bandages were proven to be effective lifesavers in combat. HemCon is a top choice of America's Armed Forces to stop severe bleeding. Now the same advanced, natural blood-stopping technology can go right into your first aid kit.

WoundSeal QR Powder stops bleeding instantly. QR does not wait for the body's clotting process to take place. QR Powder does not burn the skin and does not cauterize. QR Powder is non-toxic and is not biologically derived.

Blood Clotting Spray & Spray on bandages - Our blood clotting spray helps control superficial bleeding by forming an immediate porous, skin-like film over minor cuts and abrasions. Promotes healing and helps prevent infection

blood stop

by sagehen - 2015-03-14 10:03:23

Thanks, will get some.

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