Xarelto

Posted by trish602 @trish602, Dec 11, 2016

Anyone here on Xarelto?

Interested in more discussions like this? Go to the Heart Rhythm Conditions group.

@2bildeb

I’m trying to research for an upcoming appointment with my hematologist . I would like to know if Xarelto can be used in the 10 mg per day dosage as a preventative medication after a year on 20 mg for dvt/pe. I’m not comfortable just stopping it completely but the side effects are terrible.

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I’m thinking ahead to when it’s hopefully time to be off the xarelto but know I will be very anxious about getting another clot. I was wondering if a reduced dose would offer some protection without the side effects. I’m have off and on back pain and low energy and leg pain.

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Hi @2bildeb, my input to this discussion over the last 6 months is pretty complete, but my status and reason for an anticoagulant (“blood thinner”) may not be clear. DIagnosed with A-fib 3 years ago, my cardiologist (and generally all of those working in my HMO) give first priority to Coumadin (generic warfarin), and I have been on it every since. A-fib symptoms are minimal, and the Coumadin is only for preventing clots in the upper chambers of my heart. So far, so good.

In your meeting with an hematologist, I think your most important — and perhaps first — questions should be to find out whether your diagnosis suggests that you will be on an anticoagulant indefinitely. With that answer in hand, you can more confidently ask other questions about which type of anticoagulant (not “brand” but type) suits you best. With THAT answer in hand, you’re equipped to look for a second opinion if the first one leaves you with continued discomfort and anxiety. We’ll be grateful to know how you make out in your next appointment and any that follow. Martin

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I need to ask, how do you deal with the dietary restrictions of being on Coumadin? My research indicates that it’s fairly complected and you have to be very watchful of your diet. I’ve been on Xerellto for a year now and seem to have no side effects. I have AFib and a leaking valve. Unless I consider the cost. I do worry that I take 1300mg Tylenol several times a week (aching joints) and the long term effects on my liver. I like and eat a wide variety of fresh food. When asked, my primary simply said “you wouldn’t like the restrictions”. Anyway. Thanks for your input. You’ve been there. Grandma Jan

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@grandmajan

I need to ask, how do you deal with the dietary restrictions of being on Coumadin? My research indicates that it’s fairly complected and you have to be very watchful of your diet. I’ve been on Xerellto for a year now and seem to have no side effects. I have AFib and a leaking valve. Unless I consider the cost. I do worry that I take 1300mg Tylenol several times a week (aching joints) and the long term effects on my liver. I like and eat a wide variety of fresh food. When asked, my primary simply said “you wouldn’t like the restrictions”. Anyway. Thanks for your input. You’ve been there. Grandma Jan

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You and I have exchanged information before @grandmajan, so I’ll pick up where we left off (as I remember it). I don’t find dietary restrictions to be a problem with Coumadin. The reason is that your personal standard diet gets locked into your anticoagulant index as long as you stick to it, and when you settle on a Coumadin dosage, it’s already taken into account. I check my index regularly (monthly) with a blood test to be sure I remain at a steady level. My diet includes a modest portion of green vegetables every day, despite their vitamin K content, although I don’t eat spinach any more because of its high K content (the only limitation that confronts me).

I am concerned about your dosage of 1300 mg of Tylenol several times a week. The FDA recommends no more than 600 mg of Tylenol in a 24-hour period — if at all (especially if you consume alcoholic beverages). The FDA also recently issued warnings about Xarelto and Pradaxa, both anticoagulants for which there is no antidote available yet. Your doctor should now give you pretty detailed advice on how to avoid bleeding while on those two medications. I’d ask for that advice as a Xarelto recipient. I hope this is helpful. Let me know how things are going with you. Martin

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76 yr old female after two episodes was diagnosed with a fib…Been on Xarelto 18 months…NO problems whatsoever…In fact whether it’s the benefit of Xarelto or the other 4 drugs the cardiologist prescribed I feel so much better than in the last few years ! Wishing the same good luck for you too ! Sally

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@misssassy

76 yr old female after two episodes was diagnosed with a fib…Been on Xarelto 18 months…NO problems whatsoever…In fact whether it’s the benefit of Xarelto or the other 4 drugs the cardiologist prescribed I feel so much better than in the last few years ! Wishing the same good luck for you too ! Sally

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@misssassy, Hi Sally. My name is Rosemary. I want to extend my hand and welcome you to Mayo Connect. Thank you for posting this information about your successful treatment. I know that there are members who will be happy to see this, and perhaps have some questions for you, too. This is wonderful to hear that you are having such good results!
Sally, Would you tell us a little about yourself? How long have you been dealing with heart issues?
Rosemary

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@misssassy

76 yr old female after two episodes was diagnosed with a fib…Been on Xarelto 18 months…NO problems whatsoever…In fact whether it’s the benefit of Xarelto or the other 4 drugs the cardiologist prescribed I feel so much better than in the last few years ! Wishing the same good luck for you too ! Sally

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@misssassy, I share Rosemary’s encouragement from your having good results in therapy for A-fib. I would add that the results are all the more encouraging because they might be fundamental rather than medication-related. I say that because Xarelto is not a med used to treat A-fib. It is an anticoagulant that protects against blood clots developing in the chambers of your heart — it’s a preventive, not a curative medication. So you may be the beneficiary of improvement in your body’s ability to deal with A-fib. To be more certain about this, perhaps you’ll have the chance to ask your cardiologist whether Xarelto is also treating your A-fib symptoms, and if not, what accounts for your progress against A-fib? I was diagnosed with A-fib two years ago, but had irregular heart rhythms for a number of years before that; I was one of those who had the good fortune of being only slightly symptomatic for years — so much so that the A-fib wasn’t showing graphically on my EKG until 2015. My anticoagulant since then has been Coumadin, and I’m doing fine, but your experience would be helpful to me. If you can, give us an update as you take more steps through your therapy. Martin

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Hello,
I am a young (using young loosely :-)) 44 year old African American woman who was diagnosed with bilateral blood clots on June 8, 2017. I was in the hosptial for 6 days. After running several tests the doctors concluded that my blood clots and DVT were factored from wearing a walking boot and sitting most of the day. I have been on Rivaroxaban (Xarelto) 20 mg a day for the past seven months. After conducting several blood tests and having an ultra sound in both my legs (DVT started in my left leg), my oncologist is looking to take me off of Xarelto. She stated she no need for me to be on it the rest of my life. Especially seeing that the blood thinner side effect provoked extra heavy bleeding during my cycle causing me to become anemic (Im taking iron pills three times a day). Natually, I am concerned and scared to come off of the blood thinner as I do not wish for another episode to occur or worse. Can I switch to aspirin and more “natural” herbal vitamins?

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@skeelen

Hello,
I am a young (using young loosely :-)) 44 year old African American woman who was diagnosed with bilateral blood clots on June 8, 2017. I was in the hosptial for 6 days. After running several tests the doctors concluded that my blood clots and DVT were factored from wearing a walking boot and sitting most of the day. I have been on Rivaroxaban (Xarelto) 20 mg a day for the past seven months. After conducting several blood tests and having an ultra sound in both my legs (DVT started in my left leg), my oncologist is looking to take me off of Xarelto. She stated she no need for me to be on it the rest of my life. Especially seeing that the blood thinner side effect provoked extra heavy bleeding during my cycle causing me to become anemic (Im taking iron pills three times a day). Natually, I am concerned and scared to come off of the blood thinner as I do not wish for another episode to occur or worse. Can I switch to aspirin and more “natural” herbal vitamins?

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Hi @skeelen, apologies for not seeing your message sooner. I’m also tagging @predictable and @gr82balive to join this discussion.

Skeelen, you mention that your oncologist is the specialist recommending that you be taken off Xarelto. Are you also being treated for cancer? Certain cancers can have strong blood-clotting tendency and an oncologist would be the best to advise you on alternatives. Is a cardiologist also being consulted in the decision-making? You are right in asking questions. What did you decide in the end?

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Hi @colleenyoung. Thank you for your response. My apologies. I wrote “oncologist”. I am seeing a hemotologist. I have not decided in which direction I am going to go.

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@kanaazpereira

Hi @trish602,

One of the common side effects of Xarelto (Rivaroxaban), can be back aches, according to Mayo Clinic:
http://mayocl.in/2gpJpC9
I would also like to tag @mlemieux, one of our mentors who has taken Xarelto; he may hopefully have some more insight for you.

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I have had two Nuclear Stress tests. The first time was quite scary, as I felt like I was hit by a truck. The second time was not so bad, as I was knowing what to expect. The big difference from a treadmill test, is the fact that your veins all open immediately. So your heart is stressed out immediately. It only lasts a few minutes, and is really not that bad, once you realize that is what's going on. The nuclear injection ( IV ) feels warm at first, but goes away. If you've ever had a Cat Scan, the feeling is similar. According to my Cardiologist who performed the procedure, said it can be reversed immediately if something goes wrong. At least that's what he said. I trusted his word.

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