Stopping Xarelto (Page 2)

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.....

REPLY

REPORT

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.

REPLY

Was this helpful? 0

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.

REPLY

Was this helpful? 1

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!

REPLY

Was this helpful? 0

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!!!

REPLY

Was this helpful? 1

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.

REPLY

Was this helpful? 5

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

REPLY

Was this helpful? 4

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.

REPLY

Was this helpful? 0

I don't know if it will help you but I was on xraeltro for a year and I quit. I started by one every other day for a week then the next week I took two, then none. I took aspirin since. Told my doctor and he said that was okay just continue the aspirin. Best of luck

REPLY

Was this helpful? 3

Thank you for the update. Did you experience any weight gain while taking Xarelto? I have gaine 20 pounds in my lower stomach. I exercised before my PE and still do my best to walk every day. Once again my Dr said , quit eating so much and loose weight. I told him I never had this problem along with the swelling in my joints until I began Xarelto. All this fell on deaf ears. I am to be on it until the end of June for a PE that resulted from having a shoulder replacement in late Dec. 2015. I feel like the medicine is killing me! I have never felt more awful! I'm short of breath I can feel my heart beating irregularly and as stated my joints hurt along with weight gain. I greatly appreciate your feedback. I really want to stop taking this medication.

REPLY

Was this helpful? 3

Dear hotinohio,

You asked if I gained weight on xarelto. YES. It looked like I had backed up to an air hose. It is terrible. 30lbs weight gain in 11 months. My Dr. said you need to exercise. I had just told him I could barely walk. My back really hurt the worst with muscle spasms. Again the Dr. was very nonchalant about these symptoms. I could not find a way to get through to him or his nurse practitioner. I can not stand up straight without a lot of pain. I did not take Advil because you can't while on a blood thinner. I started taking Tylenol Arthritis and it didn't touch the pain and made me retain more fluid. I just have been trying to suck it up and endure. Then I thought why am I living like this. I began doing my research on xarelto and it's questionable testing history. Because my sister is a physician she could get on medical sites that I could not. We could not believe the lack of research on this medication. It did not have a good track record in testing because it made the blood too thin causing bleeding gums, intestines etc. AND YES extreme body pain was noted as an adverse effect. They did not test the medication very long before it was pushed on to the market. Like I said, we are the test subjects. I'll make a prediction that xarelto will be taken off the market. It has thousands of legal cases against Drs. and the company that pushed the medication. Ultimately it is the FDA that allowed it through. Some individuals must have gotten a pay off to push xarelto on the market before it was tested sufficiently.

REPLY

Was this helpful? 3

I have the same symptoms and feelings. My lower back bothers me so much and I walk like I'm 90 instead of 55. Same results with my Dr as well. Told to quit eating so much abd exercise, even though I do exercise, and loose weight. I appreciate your input. You have helped me make a descion.

REPLY

Was this helpful? 3

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.

REPLY

Was this helpful? 5

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!

REPLY

Was this helpful? 1

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.

REPLY

Was this helpful? 4

Hi. Did your doctor at least tell you about being on low dose aspirin? You may want to ask. I do not know what the cause of your clot was - mine was/is Factor V Leiden. I was on 20mg of Xarelto for one year and now have been on low dose aspirin for 3 months. So far so good. Best wishes!

REPLY

Was this helpful? 0

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!

REPLY

Was this helpful? 5

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).

REPLY

Was this helpful? 1

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.

REPLY

Was this helpful? 1

I got DVT from taking the contraceptive pill and was put on xarelto and told I would need to take it for 3-6 months. Obviously I stopped taking the contraceptive pill straight away and yesterday after six weeks of being on xarelto I paid for a private Doppler scan to find I no longer have DVT.
I have now stopped taking xarelto and will be going cold turkey although I will take it again a few days before a long flight in 3 weeks time.
Do you think it's safe coming off even though doc said to stay on for 3-6 months. I was getting a lot of leg pain which seems to be a side effect. If DVT is gone don't see the need to take it anymore.

REPLY

Was this helpful? 0

Hello Emma, Sorry to hear about that kind of side effect. When did you first start taking Xarelto?

REPLY

Was this helpful? 0

A fall produced a cut and abrasion. Bled for 5 days so stopped xarelto 15 mg/day. Had taken for 4 months for DVT. Am now...

6 REPLIES

Started Xarelto a year ago after blood clots after breast cancer surgery. Having surgery again in a week and was taken o...

2 REPLIES

I have been on xarelto for 2 & a half years for afib.....was recently taken off of it....I am having flu like sympto...

2 REPLIES

I was prescribed xarelto 20 mg for 20 days following foot surgery, due to a history of a clot in my calf, took last pill...

4 REPLIES

I'm a 21 year old, female athlete. I had surgery on my left knee (3rd one) after tearing my meniscus in December. Re...

5 REPLIES

I have been taking 10 mg/day of Lisinopril for 3 months and have developed a tightening in the chest and flu like sympto...

127 REPLIES

I have been taking Levothyroxine .88mg for the past two years. I just left town on a three week vacation and realized I ...

127 REPLIES

I've been taking Eliquis for a couple months after a bout of a-fib. I'm back in sinus rhythm and am in the low r...

40 REPLIES

I'm on 75 mg methadone and I want to stop on my own because it seems my counselor wants me on forever. Can I do it m...

12 REPLIES

How do you stop Contrave when you are at your goal weight? Do you go down in dosage or stop cold turkey? ## Follow the t...

11 REPLIES