Stopping Xarelto
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I have been instructed to stop my 20mg a day after being on it for 6 months (2 PE's one in each lung at Xmas) and I have to say I am really worried and every little pain I think its come back. I have another 3 weeks to go until I got for a blood test to see if I am prone to clots however I am completely paranoid. Anyone else had the same feelings....as the meds have been my comfort blanket for so long.....

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REPORT

If you have been on Xarelto 20mg for longer than 6 months with no subsequent DVT or PE episodes, ask your doctor to reduce your dosage of Xarelto to 10mg a day for long term maintenance; you will be safe and your side effects will go away; the FDA approved this strategy 2 years ago. Xarelto is the best daily oral anticoagulant (NOAC) out there when it is used properly.......and it now has an antidote.

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My doctor told me to stop Xarelto. Didn't say anything about tapering off. I've been on it about 6 weeks now. Vascular Doctor didn't find any blood clots. Mentioned I didn't need to continue medication but to check with my primary doctor. Should I be worried about side effects?

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Re: Nia (# 117)

Hi...how long was you on Xarelto when you stopped?

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After experiencing some short-term memory problems, as well as some muscle pain and burning sensation near my mouth, I went off of the Xarelto. Now that I’m taking Ecotrin aspirin, I feel a lot better.

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Re: Robzilla (# 2)

Several years ago I was on Coumadin/Warfarin after having 2 DVTs & a PE (on separate occasions). An OBGYN said there was no reason to remain on the blood thinners. Within 2 weeks I developed another DVT. My primary Dr said I would be on it for life. Never went back to that obgyn since. Once I was on the correct amount of Coumadin, I don’t need to have a PT test as often.

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Re: Marginot (# 114)

Yes, I know if no afib then no blood thinners. While doing a stress test a couple years ago afib showed up. I think it occurs once in a blue moon which if fine with me since I don’t tolerate drugs very well. I’ve tried two blood thinners now and both times results were terrible so I will never go on them ever ever again. They are poison and only the drug companies are the winners in that because of the terrible cost. When On Xarelto last the year the side effects were horrible and the medical profession failed to tell me about the bleeding. I had other side effects as well, but was so disgusted they never told me about the bleeding aspect. I took myself off and have vowed not to take any new medications without ME checking them out first. My side effects list is so long it isn’t funny.
So now I have a attitude towards new drugs being prescribed.

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Re: Annie (# 113)

If you don't have AF you don't need blood thinners.AF is the condition where your atrium has no regular beat causing clots to form and then break off to hit your brain. It seems you have extra beats coming from elsewhere. My wife tried the calcium channel blocker called amlodipine 2.5 mg 3x/day.which removed the extra beatsI believe this drug helped by improving coronary heart circulation
James

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Re: barbie4758 (# 108)

I’ve been off Xareltro for over a year now. I saw a new cardiologist and she questioned if I truly have Afib. I wore the Holter monitor 48 hours. Nothing showed up. My blood pressure machine says I have irregular heart beat from time to time and see a Dr if I could have A-fib. My cardiologist is not now concerned about the afib. All she did was change BP meds.. So I’m glad afib didn’t show up, at least for now. Maybe some day it will, but regardless NO blood thinners for me. Hopefully in the future someone will come up with a better solution, other than these terrible medications

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I’ve been on Warfarin for over 20 years. I also had 4 blood clots & a PE. My dr said I would be on it for the rest of my life. There was one time when I went to a new OBGYN & he said that there was no reason to stay on blood thinners. So I went off them. I knew I had a problem after a week & went back to him. He said there was nothing was wrong. A week after that I had a clot in my left leg & a PE. I called him from the hospital & he wouldn’t take my call. Never went back to him again. What I should have done was call an attorney. But I was in my late 20s- early 30s. Have been on warfarin since. My doctor doesn’t want me to go on Xarelto since my levels are in a perfect range & Xarelto is fairly new.

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Re: I stopping (# 20)

You shouldn't stop it .You were placed on it for a reason.I have AF and take it to prevent strokes, emboli from the heart.I take it altrnate days but supplement it with aspirin.This is a calculated risk.Bleeding from blood thinners versus emboli from the heart.My prescriber is not happy but that is my choice.
James

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Re: Hefina (# 90)

I hope you are doing better. I am going to ask doctor one more time and then I am stopping this Xarelto. It is poison to us! I have a list of natural thinners and going to take aspirin...although they say it doe not help with afib..I have had it for 18 years and still here. If the good Lord wants me, I am ready. I cannot live in this type of pain anymore..All thinners do the same thing so why try different ones?? Good luck to you!!

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Re: Terri (# 97)

What issues did you have with Xarelto? And you say you were on Warfarin before, why did you switch? Doctors advice? Hope you are doing well now?

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Re: Annie (# 104)

Hi.Yes, it just seems like all they want to do is push those meds. I know some are essential in saving lives , but some are still not right for us. I tried Coumadin and Xarelto. Both are not for me. I have Paroxysmal Afib, which s only occasional...18 years now. Just because I am 71, overweight and a woman I HAVE to take it..No, I do not. I am getting worse and the walking is getting worse. I hurt from my neck to my toes. Do not want to go on this way..I am going to try another doctor and see what happens. In the meantime I am going to eat blood thinning foods and try to go off Xarelto. Eliquis does the same that I hear of...….If they are all blood thinners, seems the side effects would be the same. So I wish you luck. Please let me know how you are doing? being he same age almost we have a lot in common. Oh ya, they have found out that I have mild diastolic disfunction of left ventrical...What next>?? Well good luck to you.. Barb

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yes I have the exact problem, but I got my blood clots after surgery. I am suppose to ween off next 2 weeks.I have a call into my PCP to see if I should to every other day??

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Re: n (# 105)

N have you thought of going to a different clinic or asking for another Dr. I’m very stubborn and I know that if I were in your shoes I’d fire your Dr and get a new one, but this is only my opinion. No one should have to endure the pain your in. NO ONE. I know about the shortness of breathe too cause I have lung disease as well as lots of other things. I decided to take a aspirin 325 mg instead of taking Zarelto. And in a few days it will be a year since I stopped taking Zarelto. Best decision I ever made. I think if I were you, I would get paper and pencil write down on paper every thing your experiencing. Read it over and over and I bet your answer will there in what you need to do. It’s a decision only you can make. I heard a friend at church last week say she’s fed up with most Drs and she decided she is taking back her life and living it as she sees fit. (She had gotten a wrong diagnosis). All anyone can do for you is Give you ideas but the decision is only yours. ... as I have said before ...I thank the Lord everynight for my day I had and so grateful that I made through this day with no heart attack, stroke, or blood clot. Hang in N and let us know what you decide to do...

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Re: Annie (# 104)

Hi. Yes I now know I am not the only that has pain. I tried Coumadin and it did not agree with me. This Xarelto is causing terrible pain. I cannot do anything anymore. I have gained so much weight, not sure its that or not. Short of breath, I do have arthritis, but I usually can tolerate it. This is ruining my quality of life. I asked the doctor about it and he just says you need to take it. Could try Coumadin. I said I have tried that...he just shrugs his shoulders...….up to you he says. I guess I do need a new Dr. My cardiologist is the same. So I should look for another treatment or just take my chances. Sometimes I just don't care anymore. The Dr. acts like he doesn't want to discuss it anymore. I have never heard of a shot for thinning blood? Thank you so much for responding. I am at a loss at what to do. I have had afib for 18 years and could manage it but as you get older it gets worse...so I guess its my choice as he says...Thank you and good luck to you!

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Re: barbie4758 (# 103)

I’m 73 in Sept. I had a stress test back in 2013. while doing the stress test a-fib showed up and I was instructed to stop walking. They promptly sent to the dr who works with the a-fib patients. I tried Coumadin from July, Tuesday to Sat that year. By Saturday I was beside myself with terrible pain, had been up all night in severe pain. Oh I’d say about #8 on the pain scale....Nothing I did took the pain away and my husband said I was acting drunk. I don’t drink at all so this was a concern. Since it was a Saturday I called the nurse online. She said to stop immediately. Which I did. Within hours I started to feel better. Within the next few days I was myself. So last June I was back seeing the cardiac nurse who works with the Dr I was seeing. Talked me into trying Zarelto which I didn’t tolerate either. I tried it 9 days and experience the legs hurting and internal bleeding. I took myself off and let the Drs office know I made that decision. So now they insist I need meds for LDL cholesterol. I’ve tried four of them and the leg pain is like what I experienced with the blood thinners. If my insurance will pay for the new drug which has been out four years now I will try that only if the co-pay is less than $20. And this is an inj. once a month. If not, no more experimenting with me. Later this month I’m going to be wearing the holter monitor again to see if there is the a fib. From there they will decide what to do. I started with a new cardiologist today. I like her, she seems to understand what I was saying. Only time will tell. Back in 2008 I had two stents put in. So that’s when I learned that I had heart disease. I hope this explains a little of how I was diagnosed.

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Re: Annie (# 98)

May I ask why you were on Xarelto and how old you are? The dr. says this is a factor for me..afib and 71.

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Re: Annie (# 101)

I just knew it. They are wanting their pockets lined...I am still on it as the doctor scares you into taking it. I may try Coumadin and get off this painful awful Xarelto!!

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Re: barbie4758 (# 96)

I am doing well after stopping blood thinners. It’s been nearly a year in July since I stopped taking the Zarelto. Best decision I ever made. While listening in the car to the radio on a PBSstation a former drug representative was describing her training and experiences of going to clinics to get Drs to prescribe these drugs. OMG. Listening to her was a eye opener. She finally quit be a representative of the drug companies. The pressure that was put on her to Push these Doctors to prescribe these drugs was enormous, and she could no longer deal with the guilt she felt as she knew from her training what the drugs were doing to us. Taught me to ask a lot of questions before agreeing to take new prescriptions. I just wish others could have heard her. A real eye opener for sure.

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