Stopping Xarelto (Page 4) (Top voted first)

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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If u are really concerned go in and have lab test done don't wait if it was me I wouldn't put anything off I had two blood clots one after each operation in my leg and was told by my Dr that I would be on a thinner for-ever and I have tried the Xarelto and it gave me issues so I stopped cold turkey for two days and was placed back on my old thinner Warfarin no issues and I do lab either once a week or every 2 weeks depends on what my INR is this past week it was kinda high so this week is lab I need to know and when it gets to high I stop a day or two and restart. Like I said never put things off if u really want to know whats going on..

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Re: barbie4758 (# 96)

As far as the Xareltro I’m happy to say it was a very good decision to get off that nasty drug. I recently became extremely ill but it has nothing to do with Xareltro. I was throwing up and had severe diarrhea. After a couple trips to ER it was discovered I had a hernia which needed surgery. I was concerned thinking a blood clot would appear. I was fortunate that did not happen. I’m now post surgery 5 weeks and doing well until my brother died this week. This has nothing to do with Xareltro. I’m truly convinced that this drug is not good for anyone. All it is is a money maker for the pharmaceutical companies.
Thank you for asking how I’m doing after stopping Xareltro. I’m doing very good.

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Re: Barbie (# 72)

How are you now without thinners? Starting tomorrow morning they said i don't have to take them anymore. I was on 20mg of xarelto. I had a bunch of blood work done and it was all normal. They believe mine was from smoking ciggs which I no longer do.

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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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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: 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: 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: 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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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: 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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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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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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I had a PE 1 month ago,my doctor dissolved all the clots now he said i need to take 20Mg of Xarelto daily for a whole year, i've been feeling a little bit dizzy and a little bit with blurry vision and nauseous... I don't know if that symptoms will increase or if I will feel like that all the time, but right now i have more afraid what will happen right when i complete that year, will i have another PE? or my blood will make mor clots :S, i just dont know.

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You're definitely not alone in feeling as you do. I think that it would be unusual to NOT have at least some anxiety about being off xarelto for several weeks (while waiting to take the blood test that will tell you if you need to remain on it)-after you've been relying on it for the previous 6 months to prevent additional PE's-after having had 2 already.

I'm one week into the 6 week waiting period for those genetic blood tests right now-after having been on it for an entire year for a small second DVT, something obviously much less serious than yours and I think about the possibilities too. But I try to concentrate as much as possible on any positive aspect though-like not bleeding as much as I'd been from my Crohn's. That increased blood loss had eventually driven me to being iron poor anemic.

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Juan,

I have the same symptoms after being on Xarelto for about 8 mos now at 20 mg day...

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Robzilla I feel for you, I'm 27 yo and have six clots in my lungs and then two in my abdomen that came after taking medication. I went to hospital and they did the same thing anyway. I have have gone to oncologist (because of my age they thought I must have cancer to get clots) and few haematologists and other specialists.. My results showed I have inherited protein s deficiency, Prothrombin gene mutation, factor v mutation and homozygous for MTHFR mutation, some of the doctors wouldn't see this as a good enough cause for blood clots. My main specialist wanted to take me off blood thinners and when I asked any question he said "in life you take risks, like driving a car maybe you have a crash maybe you don't" I was so anxious about stopping the medication I got a new specialist, every doctor since then he told me not to go off blood thinners. I am still scared, scared of having a stroke mainly, scared of bleeds from the medication also.
I would suggest talking to your doctor about staying on the thinners for a while longer at least something for when you're flying. It's scary and it's painful you may not of had them until now but it did happen. X

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Hi Karrie, I was in hospital while undergoing all of the initial genetic tests and was provided with a oncologist to begin with, then later I was referred to another hematologist where I took the tests again and since then (because my doctors don't like working together) and from other emergency trips to hospital the same tests were done with the same results. I'm not sure if I was actually on any anticoagulant when they did the initial tests as they did CT scans As soon as I came into emergency and found clots, it was mentioned to me at some stage that depending on what type of anticoagulant you're on it could cause misleading test results.. How ever all of my test results have been consistent the only level that's changed is my protein S deficiency and it ha only changed by a very small amount. The specialists asked my immediate family to be tested since they're all inherited my mother and father would have to carry at least one of every faulty gene I have, so in my case I inherited protein s deficiency, prothrombin gene mutation and factor 5 from my mum and the other gene mutations my dad was all positive for. You can however have an acquired mutation which is different and sometimes difficult to detect when on blood thinners or when you have a actual blood clot (so I have been told).

I think someone may have said that xarelto doesn't affect your gene results but I'm not really sure about that. Perhaps you could move to clexine jabs before the tests or they may put you on aspirin? I would say it's defiantly been worthwhile seeing an hematologist personally, I was able to educate my family and help prevent them from stroke or heart attack by being tested we found they also had clotting problems. Also it's good to have someone in that area to voice concerns with about medications and side affects. if you find a good one they will help with your concerns, mine has even referred me to a gene spec so my partner can be tested to help us find ways to have healthy babies one day and to see if there is anyway in not passing down my faulty genes to another generation. I hope I have been able to assist in some way. These things are scary and medications can be tricky so far I have found the most peace has come from talking to an oncologist that cares and wants you to have quality of life.

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I Stopping- I'm rather concerned that you are just stopping on your own. I don't know your condition or reason for taking xarelto but they don't prescribe it for any reason. Hopefully you get medical guidance on what to do next to prevent the reason you were on it in the first place.

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I quite taking Carleton after a year first 2 weeks I took it every other day then once a week for two weeks! So far 6 weeks later I feel okay. Hope for the best for you!

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Dear hotinohio,

I will let you know. Today after being off now for 3 days my legs do not feel as swollen. I know this drug was causing this because the more fluid I retained the more my joints hurt. I mentally feel better because all along my body was telling me to stop taking xarelto. I did not listen to my body but my doctor who refused to acknowledge my pain and growing lack of mobility. I know I am doing the right thing for my body. I started taking baby aspirin, am drinking fluid to flush it out and taking slow walks. I repeat I think xarelto is poison for me and the Drs. deliberately will not listen and take me off this med. because they get money from drug companies every time they prescribe it. I do not have a blood clotting condition. I just was immobile for too long because of my injury and it caused a DVT. So it was not a spontaneous clot which would suggest clotting problems. No reason for me to be on xarelto for the rest of my life. What a racket ! I am sorry for your physical challenges and the problems caused by xarelto. This drug was pushed to the market too soon and the legal cases say that it did not have the kind of long term evaluations necessary to even approve it. We are the experimental subjects. I am doing what's best for me and know I am doing the right thing. I would not tell you to stop taking xarelto because I don't know your situation. I am saying they are not being up front about side effects and people taking this drug are scared to death to stop taking it because they trust their Drs. Sorry but I trust myself and what my body tells me more than a Dr. who has no vested interest in my condition, except for the money he gets to prescribe a new drug. I am a cynical optimist. Hope you work it out. I will keep you updated on my progress. Ciao.

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