Stopping Xarelto

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Emma Says:

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.....

120 Replies (6 Pages)

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1
MaryLUE Says:

Have you had a hypercoagulability test? Mine revealed a Factor B Leiden gene mutation, so I will never stop taking blood thinners. If you can have that blood test, it will let you know if you have a tendency to clot.

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2
Robzilla Says:

Do you mean Factor V Leiden? Been on 20 mg Xarelto since march 2014. Had double pneumonia in jan 2014 accompanied by DVT which threw clots to my lungs. In hosptal 5 days. Put on /Coumadin till beginning of march. Was seeing a hematologist by my request to investigate dvt just to be on safe side. After extensive bloodwork was found to have factor V Leiden clotting disorder in February 2014. Stayed on Coumadin then hematologist said no reason for me to stay on it risk too high. Said i have been living with factr V this long and b/c of my age 48 .....Went off mid march developed second DVT this was femoral got put on Xarelto same day as finding new DVT. Hematologist called and apologized said he should never have taken me off Coumadin. Saw hematologist in may he said in 3 min visit " well it looks like on your next visit in June we could discuss taking u off Xarelto" !!!! I do a lot of flying. I told my husband he said NO we have a 5 hr flight in July and a 3 hr in August and two 3 hrs in sept. I agreed taking me off second time I am a lil nervous BUT this whole thing is crazy!!! Why did the FDA approve a drug that has NO antidote for bleeding emergencies!,, giving plasma does not stop the bleeding but if I go off I risk having stroke or bleeding WHY didn't I just go into hospital on second Dvt I wish I had never started this drug. Do I need a new hematologist ??? Any thoughts please help thanks guys and Gals

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3
Robzilla Says:

Emma please read my response below ..... Your not alone I feel like I want to be admitted to hospital when they stop my Xarelto just to be on safe side.... I feel like I am in a no win situation. J&J HAS to come up with a bleeding antidote. This is not right that we should have this anxiety because of the drug company's rush to put product out so they can start making $$ in the meantime the FDA approves it? At least with Coumadin we can get vitK and plasma. I don't know but you and I were sick at same time Xmas with DVT's now we r wondering what Now? Keep in touch.

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4
Juan Says:

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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5
goodolboydws Says:

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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6
Dee Says:

Ive been on xarelto 5 weeks now. I've had pretty much every side effect. But now for last 3 days I've had deep itching all over and horrible nausea. I read somewhere that the itching can be from something serious. ? Should I go back to dr for the 7th time. ? I'm beginning to feel like she think I'm nuts. But this has all neen very real. What should I do?

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7
cenz Says:

Juan,

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

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8
Darrel Says:

Emma how did it turn out when you stopped taking xarelto? Im having bleeding from my gums and maybe tonsils and trying to get some kabs done to check it. Hopeless...

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9
Fleurie Says:

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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Kat Says:

Wondering how you are doing. I developed a blood clot after surgery latest scan says it's gone and nurse said I could get off xerelto. Can you quit cold turkey? Or slowly ween off. Have a doctors appt the 27th

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11
Karrie Says:

Hi Fleurie,
I am 34 and just a few weeks ago had a DVT/bil PE. I had a pretty serious PE that landed me in the ICU for a week in 2008 at 26. I have actually tested negative for all genetic clotting disorders and am on Xarelto for life now since they cannot figure out what is causing my clots. I am just curious about you seeing a Hematologist. My doctors didn't recommend it because they said since I was on Xarelto that the tests could not be done properly. Was that ever mentioned to you?

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12
Fleurie Says:

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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13
Lori Says:

Hi Emma,
I also have been instructed to stop my Xarelto after one year of use but my hematologist has placed me on a low dose (81mg) aspirin regimen instead. I am actually having painful withdrawal symptoms from the X and cannot wait for it to leave my body completely. Hopefully one more day! I have hetero Factor V Leiden and clotted they think because I was on oral birth control. I am not taking that anymore either. I hope this helps!

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14
Buckeye 54 Says:

I'm want to stop Xarelto cold turkey on my own due to awful side effects. Did you ? If yes any side effects from stopping cold turkey ? Thank You.

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15
Lori Says:

I just stopped Xarelto after one year (20mg daily) and have been put on low dose aspirin. I had withdrawal side effects for three days - cramping in my arms and legs and muscle spasms. It was awful but I am glad it is over and I am on aspirin only now.

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16
Buckeye 54 Says:

Thank you for your reply. I got my answer that you can quit immediately. My side effects get worse each day. I'm taking myself off the medication.

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17
Buckeye 54 Says:

Lori,

When you stopped did you stop immediately or did you take less pills each day? I look forward to your response. Thank You

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18
Lori Says:

Hi, I stopped immediately and started 81mg of aspirin same day. I was under drs instruction to do so. He explained there is in no tapering or weening from blood thinners and said that the aspirin should prevent clots that may happen from being on thinners for a year. Sometimes when u go off you are more likely to have another clot.

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19
Buckeye 54 Says:

Very very helpful! Thank You for the information on stopping immediately.

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20
I stopping Says:

I was put on xarelto about 5 months ago and was NOT told any information on it now I find out you can't just stop it but I'm going to anyway. this is a great money racket for medical industry

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120
Sparky Says:

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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119
MsTila Says:

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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118
barbie4768 Says:

Re: Nia (# 117) Expand Referenced Message

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

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117
Nia Says:

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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116
Mare Says:

Re: Robzilla (# 2) Expand Referenced Message

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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115
Annie Says:

Re: Marginot (# 114) Expand Referenced Message

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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114
Marginot Says:

Re: Annie (# 113) Expand Referenced Message

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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113
Annie Says:

Re: barbie4758 (# 108) Expand Referenced Message

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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112
Mare Says:

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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111
Marginot Says:

Re: I stopping (# 20) Expand Referenced Message

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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