Stopping Xarelto (Page 3) (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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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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I'm stopping as well. I have pain and swelling in my ankles and knees and huge weight gain as well as feel awful. Thank you for your response.

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My grandpa has Afib & is on xerelto. He just had a circulatory surgery done on his legs where they went in through his major artery, then scoped & ballooned his veins below his left knee. They told him to stop taking the xerelto 72 he's before his surgery & then resume 24 hours after his surgery. What are his risks for clotting due to being off the xerelto for that length of time?! He has the same surgery coming up for his right leg on 03/15/16, where he will again have to stop the xerelto for 92 he's!!! Any & all help or info is greatly appreciated!!!

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Thank you for your reply and support. They believe the reason I developed 2 PE was due to my left shoulder replacement. I had that surgery on Dec. 18 and developed the 2 PE on Dec. 20. My diagnostic results were not positive for a blood disorder. I have been on Xarelto since Dec. 20 and feel it's been enough time to be on the drug. My Hemotologist wants me to be on Xarelto until mid June. Then have blood work and after 4 weeks off have blood work again. If I'm negative at that time I can be off Xarelto for good. The problem is how awful I feel in the meantime. I will keep you posted. Glad you are feeling better! Take Care of yourself!

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Karrie,

I was actually encouraged to see a hemotologist after my PE. I have been on Xarelto for about 5 months with one more to go and then I am going off of it although I am actually a bit anxious about that as the date gets closer. I am 46 and had one PE. I am quite fit, not overweight, don't smoke and have no real contributing factors for a PE aside from regular travel both by car and air. I think that you should go see a hematologist and get them to do a full workup. The end results for me from the extensive testing were that they could not find any reason for my having had the PE. Either way though they should be able to give you some insight and you have nothing to lose here (except a little blood).

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I started Xarelto 20mgs 3 wks ago for Afib Cardiologist said he would like for me to try instead of 81mg of aspirin. I started experiencing heartburn at night and insomnia. I called Cardiologist office ,claim that was not the problem . I stop this med today bought vitamins that will help Afib.

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I too was instructed to take xarelto for 6 mo after my PE diagnosis. my evaluations came back negative and was not prone to clots, it was just a freak thing that happened as my legs were clean in ultra sound. I took xarelto for about 8 months. The only real side effect I experienced was fatigue. It seems to have done its job. I do have some pain from time to time in my lung where PE was. I guess it's just the permanent damage it did. I have to admit though that the thought is always in the back of my head, what if it comes back. Dr said there was no in between; it was positive or negative period as far as being prone to producing clots. That being said its still a little scary stopping the thinner but when on it I was always afraid of being cut taking a fall, a hard hit for fear of bleeding out etc etc. I live on a ranch so it's a daily risk lol. My ONLY concern now is its been 5 mo since I've been off and about 3 weeks ago I got hit in the bean pretty hard, bled quite a bit and about 1 week ago I started to have pretty bad headaches. Anyone have feedback?

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Due to debilitating pain and swelling in my feet toes ankles fingers, hands and red white and blue skin. I don't care anymore. No doctors believe I'm having that much pain from xrrelto. I've been on it 5 months for DVT in armpit. I'm stopping today.

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I've been on Xarelto for 10 months for unprovoked PE. I was diagnosed with Heterozygous Factor V Leiden...surprise at age 47! I felt terrible from the beginning of taking Xarelto. Doctors defended the drug completely, saying it was recovering from PE. Well, months later I have burning, blurry vision, fatigue and high anxiety. Six days ago I discontinued Xarelto....still feel weird and inflamed. And NOW paranoid of reoccurrence! My doc says no withdrawal with Xarelto...it's me. I feel hopeless and lost.

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I was on Xarelto for 10 months and ever since I have had chronic red, burning eyes, strange buzzing like inflammation in every cell of my body, my head feels like it's stuffed with cotton, cannot tolerate alcohol, I have half the energy as I did before taking this drug. I've discontinued Xarelto now for six weeks....no change in symptoms. My Hematologist ran every daignostic imaginable and found nothing. She told me that it could be result of taking Xarelto, no one knows long term side effects as it's a new drug. I'm 48 years old and I feel like an old woman! I've come to terms with the fact that this is my new normal .....and it's devastating! Xarelto should be banned and there is no antidote to boot...poison!

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I'm trying to find a more natural blood thinner. Obviously there are serious side effects from this xarelto. My Dr. doesn't admit it either, but I am worries about just stopping it cold turkey, I've been on it for 1 yr know, once a day, scary stuff. Any suggestions from anyone
Thanks

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I want to know if I can stop taking Xarelto? I have dark stools, leg pain, headache and nausea. I've only been on it for 9 days and just want to stop taking it.

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Omg me too. I stopped mine yesterday... and mentally I think I'm gonna drop dead any minute because my right lung was completely covered in small p.e... I think I need counselling or reassurance from the doctors saying I'm fine and not to worry like you said, this medication was my comfort blanket too.

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I've been on this drug Xarelto for nine days and drs seem to think my side effects are rare: Headache, legs ache, losing balance just to mention a few. I sent a note to the nurse who prescribed it. Her response was to exercise and lose weight as she quoted I'm round, this makes me so angry. Yes I'm overweight and I work on losing weight but I have multiple medical issues. Since starting this drug my instinct is to get off of it. I have learned to follow those instincts. I am diabetic, have NASH. A liver disease in stage 4 and because I have NASH my spleen is also enlarged. Last year I found out the vertebrae in my neck have arthritis, bone spurs, C3-7 with my arms going numb and it was suggested I have surgery. Not yet. So instead they gave me a pain injection in my back. It helped for almost a year. It's returning and the arm is once again going numb. With this Xarelto if I get an injection I'm at risk of being paralyzed, or having a stroke.. the nurse never explained there was no antidote. If the liver or spleen start bleeding how will they stop the bleeding? Guess I will die and I'm not ready yet. I also have CAD, thyroid disease, lung disease, only major organ not affected at this time is the kidneys. The list is endless.

I'm losing sleep over this drug. It's all that goes thru my mind at night. I believe so strongly that the drug companies were in such a rush to make money, they didn't take into consideration what this drug does to us. I have a friend who's a nurse and worked in ICU in neurosurgery and she is concerned for me while on this drug. She had negative things to sai about it. They discovered the afib when doing a stress evaluation. I've worn the 30 Holter monitor for 30 days several times and the afib isn't apparent then. Being the medical profession as they are they rushed me to take Coumadin. That lasted only four days. For those four nights I didn't sleep because my legs ached so severely I couldn't stand it and was in tears. Of course it's the weekend so ended up calling the nurse on line. I stopped the Coumadin that day. And my husband said I was walking as I was drunk.....I don't drink.. I improved by 80% the next day and the following day was back to myself, so that's my story at this point. I've sent a note to the person I see at the Mayo Clinic for the liver disease to get her opinion. I'm hoping she agrees with me. Either way I'm quitting the Xarelto this week and going back to my aspirin. Another factor I forgot to mention is that my platelets are on the low side at 136,000..your opinions please.

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I just stopped Xarelto about 50 hours ago after 6 months. Doc said there is no weening off. Just stop. Today I have noticed my teeth are incredibly sore. When I started xarelto I had the flu like aches mostly in my back. I can only speculate that what I’m experiencing now is due to stopping the drug. Am probably going to take baby aspirin for a few days just to ease any sudden blood thickening.

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My mom had blood clots in her legs. She was prescribed Xarelto for 1 month. When the course was finished she was taken off Xarelto. In a matter of days she was sick and we found out she was bleeding internally. The bleeding in her stomach was resolved through an endoscopic procedure. As it turns out she still had the blood clots and ended up with an IVC filter in her neck. I wanted to know what the procedure is for taking a person off Xarelto? Should any tests have been done to see if she still had the blood clots?

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Re: I stopping (# 20)

You are so right. Money, money, money! I was put on Xarelto for paroxysmal afib. Which is not persistent. I have done so much research, my head hurts!! You sure don't get info from docs. They need that extra buck on their paycheck also! Well my insurance just notified me they will no longer help pay for Xarelto, so I called my Dr. He said you need to get on one that they will support....Eliquis, Pradaxa, etc. They are all the same. So I have decided to go off all thinners and take aspirin and eat natural blood thinning foods and drink another beer! These are all natural thinners! I am 70 and not going to be around many more years so I am going to live my life my way....and keep researching. Good luck to you!

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Re: Robzilla (# 2)

If you’re in a bleeding emergency, they should be able to give you a shot of Vitamin K. Depending on amount of bleeding or injury, Vitamin K does the trick.

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Hi. I think all new blood thinners should be pulled and never used. They have way too many side effects and the cost is unreal. The old blood thinner is safer and it has a safety net when things go haywire within your own system, I have never ever had a side effect with Warfarin and I only take 4mgs a day. Sometimes the Dr tells me to skip a day or two when it's kinda high, then return to the 4mgs and recheck in 2 weeks. I also think the new blood thinners need to be rechecked because there have been two major legal cases; one on Xarelto and another one which was settled in court. If something works don't be pressured into making changes. All Dr's are sick and tired of reading lab reports so they put pressure on you to change. I will never ever be pressured again by no Dr to change what works for me. It's all a money game nowadays with Dr's and their ideas. I like it when the Dr's care about their clients and they listen to what you have to say, not just give you a number and hope you go away.

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Re: Lori (# 13)

Hi Lori,
I just was taken off Xarelto after veing on it, I feel dizzy and I have horrible chest pains and shortness of breath. Is this what you experienced?

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