Stopping Xarelto (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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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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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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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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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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I stopped Xarelto July 7th (this is a Friday) after two weeks of taking this drug. The side effects got to me. I needed to fast for an evaluation, so I decided this was a good day to stop this drug. By the end of the day I began to feel better. Next day almost my old self again. And by Monday back totally myself. Since this was a weekend I waited until Monday morning to send a message to the nurse who prescribed this drug. Within the hour I received a phone call and when we discussed the side effects, I expected her to tell me to tough it out. To my surprise she just explained the risks of stopping Xarelto. I explained I was bleeding from either my stomach or GI tract. I failed to mentioned this the first time I contacted her with my concerns. She asked more questions which I answered and thought indeed I was bleeding. I asked what else could be used instead of Xarelto, she told me other drugs that are out there or Coumadin. I declined any of them. I tried Coumadin and did not tolerate it so that ends the blood thinners for me. I returned to my aspirin. At this point I'm doing OK except for one leg hurting, but believe it's from an old injury. I think "Arthur" is there causing the discomfort.

I have come up with a plan for the future regarding new prescriptions. I will tell the medical people, Drs, nurses etc. I'll give consideration to a new drug only after I have researched it myself and get back to them whether or not I will take the new drug. I do not tolerate drugs very well and my side effects list is very long. You would think this would be a light bulb going off when they see all the drugs I can't take. I know the risks of going off Xarelto, and praying I continue to do well. Everyday is a risk for all of us, as no one knows when our number will be called and leave this world. I wish the best for everyone taking this nasty drug and their decisions to whether they continue to stay on it or quit.

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

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I had a PE from a thrombosis due to inactivity because I broke my wrist and had to wear an external apparatus screw in my forearm. It hurt like heck when I moved so I sat in a lounge chair all day for 10 weeks. I started getting a pain in the back of my knee. Long story short it was a DVT. It broke lose and went to my right lung. I was put on xarelto. Never did anyone doctor tell me of the side effects except for intestinal bleeding. After 3 weeks on 20 mg of xarelto I felt like I had rheumatoid arthritis and the flu at one time. I could hardly move without terrible pain. I told my hematologist and he said it wasn't the xarelto. He said I had to stay on it the rest of my life. I THINK NOT! I am 65 and never had a clot. 11 months on xarelto and in so much pain that I stopped taking xarelto 2 days ago. That stuff is like poison to my joints and muscles. AND MY INSURANCE WILL NOT COVER AND COST ME A LOT. I have long lost respect for doctors. They are drug pushers and get kick backs when they get people to take the newest drugs. My sister is a physician and believe me when I tell you these drug companies are like a cartel and the doctors are the pushers. If I die from a clot, it's God's will. Taking xarelto crippled me so badly I had no life. I am taking my chances and listening to my intuition which is screaming xarelto is poison for some people. SHAME ON THE DRUG COMPANIES AND GREEDY DOCTORS.

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Dear hotinohio, I woke up yesterday morning feeling 60% better than I have in 11 months. I was actually able to run a weed eater for a couple of hours. I couldn't believe it. The pain in my knees is very little. My should have a lot more PAINLESS mobility. My back still has pain but it is the pain I had before I started xarelto. I am mentally 110% better. I even noticed my blurry vision was better. I think if you have a blood condition you must be on something for clots because you will have a recurrence. Another med. would be better. Since I don't have a blood condition getting off after 11 months and taking aspirin seemed logical to me. May I suggest in your interest to please if your have a known blood condition, go to your dr. and demand a different med. To be safe, you need to have someone to successfully transfer you to another med. if you have a clotting condition. If it was a spontaneous clot chances are you do have a clotting problem. Be firm with the dr. and just tell him I will not take this drug any more and it is his job to find a med. that works better. He works for you, you don't work for him. If that doesn't work find another dr. and make a medical complaint about your present dr. and tell him you will do this if he doesn't try to work with you. THERE IS NO REASON FOR YOU TO SUFFER THIS WAY. IT IS YOUR BODY. BE BOLD. DRS. ARE HUMAN AND MANY ARE GREEDY. YOU CAN DO THIS. Best of luck and please let me know how it goes with you. I am in your corner if you need support. It is difficult to stand up to some of these arrogant and self invested drs. Sending you positive thoughts. Best of everything for you.

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I took myself off Xarelto after 104 days of being in the drug. I could not take how miserable I felt. The swelling in my joints the weight gain and exhausted ! It has been two weeks now off Xarelto and I feel tremendous ! Swelling has gone away I have 100% more energy and my joint pain has gone completely away! The Dr's can say these symptoms are not from Xarelto but I know my body and how I felt and I feel now! I was to stay on Xarelto until June 17,2016. So happy I decided to take myself off the drug! Thank you again for your responses and helpful replies. God Bless!

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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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Thank you for sharing your story ! I am still taking the drug and still feel terrible. My stomach is so bloated and joints hurt like nothing I have ever experienced. Yet Dr tells me it's all in my head as Xarelto has none of these side effects! Would not put me on another blood thinner! Please let me know if you begin to feel better once off Xarelto! Thank You

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I feel your pain Emma. I am 66 years old and after 6 months of taking Xeralto for a DVT that developed last October 2015 my doctor just took me off Xeralto 4 days ago. I am a nervous wreck waiting to have a stroke, heart attach or another DVT (thanks to all the scary commercials on tv telling you what can happen when you go off Xeralto). What do they say, your damned if you do and damned if you don't. Unfortunately we have no control over it so trying not to think about it.

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Re: Barbie (# 70)

I stopped taking Xarelto. I'm so happy I did. I was concerned at first because of all the literature that's out there. I too ached everywhere, headaches, my legs hurt so bad, then the internal bleeding. As soon as I stopped taking the Xarelto, by the end of twelve hours I started feeling like my old self. By 48 hours I was totally back to being myself. On Saturday as I'm driving and listening to the radio, I heard about a study that had been done by cardiologists and it stated that taking 325 aspirin daily worked just as good if not better for people who have afib that had been taking Xarelto. I felt such a relief knowing now I had done the right thing by stopping that terrible drug Xarelto. I have been on other blood thinners and will never take another other than aspirin because of the side effects. Next time a Dr/Nurse wants to prescribe a new drug. My answer is, I'll think about it and if interested will get back to you. In the meantime I'll research the drugs first myself before taking any new prescription.

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Re: Sayrahh (# 69)

I stopped cold turkey!! No side effects and so glad I'm off of that medicine. I suddenly began feeling like myself again!

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After several month on Xarelto (20mg) I have developed intense itching and rashes all over my body..up 2 or 3 times a night..only thing that helps is very hot water sprayed on itching areas my latest Doctor has recommended Hypercoagulababilty blood test and stopping xarelto for 1 week..maybe change to another medication or even aspirin...my main concern is WHEN if at all will the itching stop after I stop taking xarelto will very much appreciate advice from you good people out there.
P.S. How long are drug companies going to get away with lying, deceiving, and misleading us about the true statistics of bad side effects from their products.

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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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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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