Clot prevention: I'm in US where... - Atrial Fibrillati...

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Clot prevention

Judydiane profile image
61 Replies

I'm in US where xarelto is VERY expensive so i try to stretch out each bottle by skipping a dose once a week. Does anyone know how long s clot takes to form. I've had permanent afib for 8 years. Thanks, in advance, for responding.

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Judydiane profile image
Judydiane
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61 Replies
BobD profile image
BobDVolunteer

Clots can form at any time . I think this very dangerous. OK if you fiorget a dose that is on thing but to deliberately miss one or more would worry me greatly.

Judydiane profile image
Judydiane in reply toBobD

I worry about it too.....i try to eat a lot of bloodthinning foods on the day i skip........thank you responding.

kvmj profile image
kvmj

You should not skip doses. I see my cardiologist twice a year and make him give me free samples every time. If you have private insurance, you can sign up for coupons. Ask your doctor. They usually have them. The first month is usually free with a coupon. If you have Medicare, you can at least get that.

Judydiane profile image
Judydiane in reply tokvmj

I used a coupon once and when i tried again they said it was only good one time ever!!! I think they do it as an introductory thing... i get samples at the end of the year but skipping a dose lets me miss falling into the "coverage gap"

I also skip a dose to let my blood "rest". I know that sounds silly but no one knows the effects of years and years of being on thus stuff and it worries me. 😥

kvmj profile image
kvmj in reply toJudydiane

Ok, you're on Medicare. I have a prescription for Xarelto and another one that's just as expensive. I have no way of staying out of the coverage gap for long. Unless you've been cured of A-fib, you should not skip a dose. You're risking a stroke. You only have to pay 25% of the cost of the prescription while in the gap.

Judydiane profile image
Judydiane in reply tokvmj

I'm sorry you're dealing with the same coverage problems

Bagrat profile image
Bagrat

If you are doing this to try and save money ( I understand new anticoagulants can be $600+ a month) you have to weigh this against the cost of care for a catastrophic stroke. Warfarin is tried and tested and cheap although there are the frequent blood tests have to be factored in. I take apixaban my husband has stuck with warfarin.

Is there is a reason why you couldn't take that?

Annual bloods while on Xarelto should reassure you of its effects on the body. You have a choice whether to takemeds or not but by omitting regularly I think you are shooting yourself in the foot as reducing your amount by 1 in 28 may affect the intended outcome without reducing whatever effects you are concerned about. Sorry to have rambled on.

Judydiane profile image
Judydiane in reply toBagrat

Thank you for your reply. I waa on warfarin at first but since my diet is mostly "green" it didn't work for me.

Jennifer53 profile image
Jennifer53 in reply toJudydiane

Warfarin can work with greens. If during the time you are being assessed for the correct dose if you keep your diet stable they will up your warfarin to take account of your green diet. its important to be consistent with your diet.

Judydiane profile image
Judydiane in reply toBagrat

Thank you for "rambling"...i appreciate your input.

perkman profile image
perkman

Highly dangerous.

Elaine1951 profile image
Elaine1951

Try not to worry as it won’t help. You can only do your best. I’m not a medic but would Asprin help ? I’m so sorry the cost prevents you having the treatment. Are coagulants prescribed according to size of patient. ?

CDreamer profile image
CDreamer in reply toElaine1951

No, aspirin would not help as they are an anti-platelet not an anti-coagulant and therefore are only useful after a stroke. Anticoagulants help prevent strokes in AF sufferers and therefore a prophylactic treatment.

I’m sorry but I don’t understand you question about size of patient or it’s relevance?

Judydiane profile image
Judydiane in reply toElaine1951

Thanks for the reminder about worrying. Its never helpful.

Judydiane profile image
Judydiane in reply toElaine1951

No...but there is a lower dose pill but its not prescribed for afib

irene75359 profile image
irene75359

Please don't do this. Just don't. I understand your concerns but your blood really doesn't need to rest. You are taking a huge risk once a week, for what? I have so much sympathy if you are stretched for cash by the cost of your medication, but the alternative is so much worse.

Judydiane profile image
Judydiane in reply toirene75359

I guess i feel its ok because doctors seem quite casual about having people stop taking it several days before surgery....and they don't even advise against elective surgery and stopping the blood thinners for that. I don't really understand that.

Alemo27 profile image
Alemo27 in reply toJudydiane

It is " one for all " theory about anticoagulant . What is wandering me how can we measure the viscosity of the blood? Shouldn't be taking into consideration the age, the weight, THE DIET, the other med., etc.?

Cardiologist don't discuss it,.

Judydiane profile image
Judydiane in reply toAlemo27

I have the same questions. They say its like taking antibiotics and not having to check to see if they're working. I never bruise or bleed muchwhen i cut myself so i really don't know. Doc never offered a test of any kind. Grrrrr

R1100S1 profile image
R1100S1 in reply toJudydiane

Recently had to stop 3 times for surgery however I was given an injection in my belly which I think gave me some protection- not a clue what they told me it was !!!

CDreamer profile image
CDreamer

I would echo all the other warnings - does reducing the cost by skipping 4 days a month actually make that much difference when compared to the cost implications if you have a stroke?

What about considering a less expensive anti-coagulant? I’m not sure that Warfarin would be by the time you factor in the testing but it might be worth considering?

I get very distressed by posts such as these and without opening a hornet’s nest re politics - I am thankful and feel privileged that we in the UK do not need to worry about cost of essential meds and long may it continue.

Judydiane profile image
Judydiane in reply toCDreamer

Drug costs here are all about rich people getting richer......a very sad situation.

Aurealis profile image
Aurealis in reply toCDreamer

There are people in the uk forced to buy their own essential medication. And it’s not cheap. We can no longer rely on the nhs I’m afraid.

Judydiane profile image
Judydiane in reply toAurealis

I didn't know that.......definitely not good news

Quilafizz profile image
Quilafizz

Hi Judy,

I am in the US as well. There is no reason your cardiologist can't switch you to Eliquis instead of Xarelto if the medication is only for prevention of AF induced stroke. You can download a 12 month Eliquis coupon that works with your insurance and costs $10 per month for the first 12 months. During that time, you can have your cardiologist petition your insurance to cover your medication . I would also look into getting the watchman device or an atri-clip.

Xarelto's half life is only 5-9 hours, so you are not anti coagulated during any skipped dosing.

If you want to now how quickly a clot forms, prick your finger and spill a few drops onto a flat, non absorbent surface. Without anticoagulants, it takes around 30 seconds to a minute. If you have permanent AF, you are at a much higher risk for clot formation.

Studies have shown that Eliquis is slightly more effective than Xarelto in preventing AF associated strokes and has less bleeding issues.

I hope this helps.

eliquis.bmscustomerconnect....

goldey profile image
goldey in reply toQuilafizz

Last month I read a big study that somebody posted here, it proved that the active life of Xeralto is 12-14 hours. This is why we are supposed to take it before bed, so we are still well-protected when we wake up in the morning when our risk of stroke is the highest because our fibrinogen is at its highest.

dedeottie profile image
dedeottie in reply togoldey

I didnt know we were more likely to have a stroke in the morning. Is that a proven fact because if so I need to change the timing of mine. X

goldey profile image
goldey in reply todedeottie

yes, this is true. More strokes, heart attacks, and other cardiac events in general happen in the morning. this is why they tell you to take Xeralto in the evening. I assume it would be the same for all blood thinners. But you can google to find the most active time for the one you're taking.

Quilafizz profile image
Quilafizz in reply togoldey

The terminal half life of Xarelto is 5-9 hours, not 14. If a patient is being dosed twice daily, there are other factors involved and they are thus not fully covered during skipped doses. I am a physician that works in a stroke center.

Raoudha profile image
Raoudha in reply togoldey

Please can you send me the link of the study Will be much appreciated

Thanks

Judydiane profile image
Judydiane in reply toQuilafizz

Thank you for telling me about the eliquis coupon.......if i can get one, i'll definitely make the change. Thank you very much for sharing such useful info.

kvmj profile image
kvmj in reply toJudydiane

With Medicare, you can get one free month of Eliquis. No coupon will be accepted by Medicare.

Judydiane profile image
Judydiane in reply tokvmj

Thank you for the good information

Judydiane profile image
Judydiane in reply toQuilafizz

Thank you for the helpful info.

Dodie117 profile image
Dodie117

Warfarin is cheap and tried and tested. You can get a machine to self test and then only have periodic tests by the professionals. When I was on it I self tested with the agreement of my doctor and had it checked in the hospital every 3 months. I would think that would be a lot cheaper.

I am now on eliquis.

Judydiane profile image
Judydiane in reply toDodie117

Why did you change to eliquis?

Dodie117 profile image
Dodie117 in reply toJudydiane

Just because its easier. No food interactions and no testing.

Judydiane profile image
Judydiane in reply toDodie117

Yes....much easier...

Dodie117 profile image
Dodie117 in reply toJudydiane

Indeed. I am UK based so all free but if I had to pay I would be happy to go back to warfarin. The self testing was easy and I believe warfarin still comes out in tests as just as good as the newer meds - especially if it’s well controlled by self testing. Good luck in your search but missing doses is probably playing Russian roulette!!

greencrop profile image
greencrop

I assume you have health insurance or Medicare and a supplemental plan. Your cardiologist is probably prescribing the Xarelto but has he talked to you about the Watchman implant procedure to close off the left atrial appendage where blood clots form?

I have a distant relative in southern California, a female, over age 80, who had a mild stroke before she was found to have Afib. Her cardiologist offered the Watchman implant so she had this procedure and avoided the costly anticoagulant medications. That all occurred about three years ago and she's done well and had no problems with the Watchman.

I'm in northern California and had an ablation for paroxysmal Afib three months ago. I've been taking Eliquis for two years, saw a new cardiologist two days ago and he has offered the Watchman implant in order to get off the anticoagulant medication. I'm considering it.

With Medicare and my supplemental plan I had no co-payment for the ablation and one night in the hospital, and if I decide to have the Watchman procedure I would expect to have no co-payment. I'm in the doughnut hole with the medications but I wouldn't dream of trying to skip any pills.

You might have seen some of the writing by drjohnm.org who is an electrophysiologist in Louisville, KY. He's as negative on the Watchman in 2019 as he was in 2016. The Watchman is a product of Boston Scientific and the latest version is Watchman FLX which is still in the trial stage according to their website.

I hope you'll at least look into the Watchman implant procedure, see if it's covered by your insurance. I suggest that you not skip any of your Xarelto.

Judydiane profile image
Judydiane in reply togreencrop

Thank you for responding. As i was reading your suggestion about the Watchman i was thinking of Dr. John's continuing advise against it. I m've read that clots can form on the outside of the device.

Judydiane profile image
Judydiane in reply togreencrop

I've read Dr. John's thoughts on the Watchman and i tend to agree. I've also read that the device itself sometimes encourages clots to form at the insertion site. I'll think i'll look into it after its been in use a while longer. Thank you for your very helpful reply.

Barb1 profile image
Barb1

At one of our support meetings the cardiologist said it only took hours for a clot to form. I think he said 4 but I could be wrong.

Judydiane profile image
Judydiane in reply toBarb1

That's unsettling.

Kahst3 profile image
Kahst3

I also am in the USA. I take xeralto also. Yes it’s very expensive. There is a company called Janssen care path. They help relieve some of the cost. Ask you doctor they should be able to help. Good luck.

Kahst1

Judydiane profile image
Judydiane in reply toKahst3

Thank you......

Desanthony profile image
Desanthony

When you say permanent AFib do you mean persistent?

Judydiane profile image
Judydiane in reply toDesanthony

Yes...persistent......no more sinus rhythm.

Fortunately i have no symptoms......just dealing with stroke risk....

Desanthony profile image
Desanthony in reply toJudydiane

Unfortunately I get persistent AF but get breathless and fatigued and feel quite poorly. Just now I am in sinus rhythm thanks to a second successful cardioversion back in July. My first cardioversion lasted just short of a year Just seen my cardio nurse tday and we are looking into getting an ablation so long as I am a candidate I had lots of tests and scans done just before my knee replacement operation so once I have recovered I am hoping to get this done. Hope you sort out a way to get your prescription cheaply - thankfully that is a worry I don't have at the moment as I get my prescriptions free on our National Health Service.

Judydiane profile image
Judydiane in reply toDesanthony

Good luck with the ablation.....

goldey profile image
goldey

Lots of meds are a LOT cheaper in Canada, can you get up here to visit, like Bernie Sanders did last month to help those people get cheaper insulin? I am on Xeralto. I get it free because I am over 65, but the list price on my prescriptions is $278 for 3 months' worth... and that is Canadian dollars, In US dollars it would be only a little over $200.

Judydiane profile image
Judydiane in reply togoldey

I tried a couple Canadian pharmacies that advertise on line and apparentky the cost of xarelto depends on its country of origin. The less expensive came from an island near Turkey!!!! If the source is England, the price was close to US prices.

goldey profile image
goldey in reply toJudydiane

I sure wouldn't buy ANY meds from ANY foreign country. (Canada is not really a foreign country LOL.) Counterfeit drugs are huge business especially from second- and third-world countries. I sure wouldn't trust Turkey or any places around there. Don't take chances with any drugs you need to keep you alive, anti-coagulants and blood thinners are especially vital to your health.

Bucerias profile image
Bucerias in reply togoldey

I’m in Canada and over 65 years old too! I still have to pay the full price of $290 here in BC for 3 months.

Ren912 profile image
Ren912 in reply toBucerias

Gee, I was under the impression all Canadians were fortunate enough to get nearly free prescriptions. I’m in Ontario and over 65 and I copay the first $100 a year and then each prescription is $4.11. I’m on Pradaxa and the regular price would be $253 for 3 months.

allserene profile image
allserene

I was quoted $640 at Walgreens..and that is reduced to $280pm with medicare (classed as tier 3 drug)... I asked the doctor for a paper prescription and then scanned it and bought the anti-coag from Maple leaf Canada for $89... There are many Canadian suppliers. Downside is it takes 3 weeks to come and you have to use Amex or a debit to your bank (which I used 3 times)... So I built up a 3 month supply and now they have taken me off anti-coag ! Drat. Never mind I will have it as a back up....

Judydiane profile image
Judydiane in reply toallserene

I will definitely check out Maple leaf pharmacy......thank you......and i'm happy to hear you're off this stuff!!!

allserene profile image
allserene in reply toJudydiane

One good thing about apixaban/Eliqiuis is you can start it and stop it without the significant rebound effect.. The metoprolol beta blocker is the exactly the opposite and has a dangerous rebound effect... I am on 25 mg twice a day and I will take 8 weeks reducing it when I drop it....and that is fast.... New Zealand talk about 6 months ramping down from 50mg x2

Jennifer53 profile image
Jennifer53

Self medication is not a good idea with anti coagulant. Warfarin is a much cheaper alternative. Once you stabilise on warfarin you will only need 2 monthly blood checks.

Judydiane profile image
Judydiane

Government benefits, including Obamacare, is great for those who qualify. Unfortunately i don't.

Judydiane profile image
Judydiane in reply toJudydiane

The provisions of the Affordable Care Act that provide free or extremely discounted drugs do not apply to everyone. Other federal programs have similar limitations based on income and assets .

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