Xarelto - Can You Stop It When You Want

I have been on xarelto for 9 months for a PE i never had. I just seen a pulmonologist today and he said I didn't have a PE and I should stop taking them. I am very upset with my doctor and everyone that has taken care of me. My question is should I be worried about stopping them abruptly?

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Hello, Susan! How are you?

There should be no reason to worry, since you've been given the all clear. As reported by the FDA, there may be some rebound blood thickening. Thus, it is best to check with your doctor first to make be sure whether or not there is a special procedure they want you to follow for stopping it. It's always better to extra cautious, when it comes to such things.

How did you end up being diagnosed with a PE?

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Had some shortness of breath and a bad cough. Went to see my doctor who told me my symptoms sound like pleurisy. So he ordered bloodwork, next day was notified by his nurse to go to ER because my D-Dimer was elevated. Waited in ER for 4 hours after CT. ER doctor then told me I had developed a small PE in my right lower lobe and pneumonia. A 2 day stay in hospital and left with a followup with GPS and prescription for xarelto and antibiotics.

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I stopped Xarelto after 4 mos because the numbness in my legs caused by a previous drug trial got much worse. Also hair began to fall out. It wasn't an easy decision but I did my homework and read all the literature I could. There is an increased risk for stroke, but it's at its highest during days 4 - 9 after stopping. The problem was that my doctors hadn't had a lot of patients who stopped Xarelto without switching to another blood thinner. Once I told them my mind was made up, then they began to reassure me it wasn't such a high risk for me. It does vary, depending on your other conditions. I've been off it for almost a year now, no other thinner either, and I'm doing OK. The numbness never retreated back, but it seems to have stopped getting worse. The hair loss continues - but not to the same extent. I take other drugs that could be causing hair loss as well.

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I've been take rivoraban from 2015 first 15mg then doctors said 20mg I ran out of medication 2016 and ended back in hospital I got dimmer protein and was told to take 15mg twice a day which I did for 10month iam still on on rivoraban 20mg for life but I've took myself off them maybe see how far I can push myself before I have to retake tablets or end up with heart stroke yes you do loose body hair and hair off your head worst drug too start on give you double vision headache

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What is a PE?

I can't get any more detailed with this question.

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Re: Susan (# 2)

Before stopping, make sure you check with the dr that prescribed it. I’ve been on Warfarin for years & have to remain on it for the rest of my life. If you stop, you can develop another clot & if left untreated, it will move into the lungs & possibly cause a heart attack. If you need to be on a maintenance dose, I have had no problems since being on it. Not sure about Xarelto. It’s a relatively new drug & I’ve seen a lot of warnings on TV. My dr won’t prescribe that to me. The only downside to taking Warfarin is the blood work. But once you have the right dose, you don’t have to be evaluated that often. You just need to be careful not to get a serious cut or injury. And tell your dentist that you're taking blood thinners.

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Re: ellen (# 3)

Hi Ellen, can yoy tellme why it wasn't a high risk for you to stop? Thnx... I have Afib and no one knows what they are doing here in Florida

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WOW. I am dealing with the same exact situation right now I went to the ER with shortness of breath my D dimer test was slightly elevated and they diagnosed me with two small PE after ct scan. Three out of four doctors in the hospital said they didn’t feel there was anything there one doctor did so to make a long story short I spent eight days in the hospital had an ECG had sonograms of my legs and arms as well as a lung scan which checked the airways all came back negative I have been on Xarelto almost a month and I’m asking myself along with my cardiologist and my primary doctor why am I taking it my primary feels it doesn’t hurt at this point to be safe but I am extremely tired Sometimes I have back pain and a lot of my muscles and joints ache I just had extensive blood work done last week which all came back fine I am 42 years old and have never been so stressed out of my life

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Did you stop?? How can they just remove you when it specifacally tells you you have to

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Re: Billy (# 8)

My gosh! I'm going through this too! The body aches are so painful. Try taking two Tylenol with a small cup of coffee... it helps...I am also very fatigued... dizzy and sometimes confused. The mood swings are horrible. Let me know whats going on?

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Re: Annette (# 9)

No. My primary says at this point just to be safe stay on them for another month. ??

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Re: Annette (# 10)

The fatigue is the worst part. Doctors say its not from xeralto. I beg to differ. Also in hospital they gave me lovenox injections which lowered my lymphocyte count after a few days. They said it couldnt be from that. So now im panicking thinking im dying of something. After reading a lot for the last two weeks lower white blood counts is a side effect of lovenox? I honestly feel most of these doctors just guess at some of these things. Since you stopped do you have to have your blood checked periodically? The worst for me is not knowing if something was there or not.

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Re: Billy (# 12)

Hi... I haven't stopped the Xarelto....still on it. They truly had no reason putting me on it unless they are stopping world population growth quick and easy! The fatigue is so bad. I am consistently in a state of confusion till about noon. Early day today. So the exhaustion then the tension trying to walk and breathe at the same time!!! Omg! I can't believe this. I do know if I complain they will put me on more so I try the natural ones....coffee...Tylenol. Once again.. how DARE they do this!! Put us on a med there is no reversal to! Stay in touch, I am calling Big Pharma Monday.

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Re: Mary (# 6)

But how the heck do you get off it if on it? Can you ask your doc?

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Re: Payback (# 4)

Why didn't you slowly wean off them? So much safer. I want to do this as well but get warned against it. Why? Because they haven't a clue about this drug?? How does the FDA allow this?

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I have been taking 15 mg of Xarelto 2x daily for 20 days since I had a blood clot after surgery. I lost one pill and I took my last one this morning. I now go to 20 mg 1x daily. Is it ok to start the 20 mg in the morning and not worry about the pill I lost?

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I have a dvt in my leg and have been on xarelto for a month. I ran out and have had nothing for a couple days and can't get it. What can I do till I can get my refills? I'm scared!

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I’m on xarelto for a small 6mm clot found in my femoral vein I was on bc prior they put me on xarelto and I had to be put back on progesterone only bc along with the xarelto the side effects for both are almost identical I’m in pain every day my back is always on fire I hurt in my joints and muscles all the time I spoke to my primary who swears it’s the bc but she can’t be sure I started taking both within days of each other the clot was gone after 7 days I feel like I have fibromyalgia since on this xarelto I need to go off it and I hear it’s almost as bad as being on it but I’m going to try it and substitute a back aspirin my Obgyn wanted to do a nova-sure procedure which entails burning off your uterus lining and the vascular doctor wanted the Obgyn to do D&C which is novasure without burning the uterus lining he was looking for cancer as the cause of the clot because of the vein it was found in I opted for an internal sonogram instead. I can’t get relief from any of the 3 doctors they don’t agree on anything and the pain from this pill is worse I didn’t even know I had a clot this can’t be the only solution is constant pain ??? Any information would be greatly appreciated I feel like I’m always in pain and it makes daily life way too hard for me these days and I’m miserable

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