← Return to Anyone here on Xarelto? What's your experience?

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@yoanne

@trish602
hello, I'm yoanne, I as I mentioned in some other posts, I have been taking Xarelto for three years now (A-fib with risk of stroke). I thougt I didn't have any problems. but 4 weeks ago suddenly I noticed blood in my urine. this lasted 24 hours, 3 three days later I had severe nose bleeding. I decided to lower the dosage, in stead of 20 mg I took 15 mg..these are considered minor bleedings, but I started to fear a major bleeding. so I started to collect more details about Xarelto and the other new oral bloodthinners. of course I went to see my family doctor and I also made an appointment with my cardiolgist. thanks to internet I noticed that there was a difference in the list of side effects between the american patient information and the european. I read in the american leaflet that muscle spasm can occur and this is exactly which is bothering me since two years.(I never thought of Xarelto, magnesium deficit most probably, although the pain was much stronger than a normal spasm). after lowering the dosis I have no problemes anymore, no pain in muscles, no bleeding. nevertheless I and my cardiologist decided to change the bloodthinner, I wil start with ELIQUIS, because of a better documentation and because the plasmalevel is more stable during 24 hours. (Xarelto has a short half -life,no protection over 24 hours).
I have never heard about your problem, I had to interrupt the medication on several diagnostic procedures, like you. the problem is that these bloodthinners are rather new,, not enough experiences in the daily practise. so we have to be alert !!!.

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Replies to "@trish602 hello, I'm yoanne, I as I mentioned in some other posts, I have been taking..."

@yoanne and @trish602, I'm just butting in to say that a friend and I (both in early 80s) have Afib and are on Warfarin (Coumadin) -- me for two years and he for 10 years. I have occasional periods of light bloody urine, associated with prostate surgery I had 7 years ago. My friend has had no such incidents. He uses a clotting analyzer at home; I drop in to my HMO once a month for a blood withdrawal. The HMO tracks my lab tests closely and calls me when a new one comes in. We agree on any change in dosage (always minor) and say goodbye for another month.

Our choice of Coumadin is based on the fact that an antidote is readily available everywhere in medical clinics. Not so in the other blood thinners yet. Another friend of ours died nearly two years ago when the emergency room had no antidote for this blood thinner. I won't take that chance by changing the basic medication until it has a proven antidote on hand everywhere.

Hi @predictable: I appreciate your "butting in" as you say. I appreciate anyone who is willing to share their lives with others so that they may help someone. I was on warfarin for many years but it failed me. After getting two more blood clots my oncologist decided to take me off the warfarin and put me on Xarelto. I so fear the side effects, as you do. I am in your age group and don't like having to take drugs with such severe side effects. Thanks for you info. I did not know there was no proven antidote at the time I was put
on Xarelto, there was so much more going on with the blood clots coming up again.
Trish D.

@yoanne: Hello: I appreciate your response to my problem more than you know. I am trying to bring awareness of this problem about because no one in the medical profession seems to have heard of it before. The pain is excruciating, when I have to go off the Xarelto. I now need one more procedure and a small surgery. I fear going off the drug because the pain (on three occasions) sent me to the ER. All I'm given are opioids. I have an extremely low tolerance to them and usually refuse the Rx. I cannot function on even a quarter of a10 mg pill. I'd rather not feel like that so I refuse the Rx. I am on 15 mg of Xarelto now and have been for the past 3 years.
Tomorrow I'm seeing a oncologist/hematologist because I have not had my blood tested this year. I felt safer on Warfarin even though I suffered 4 blood clots and a PE, because there was always something to help me. Thanks for your info. I truly appreciate it. I have
heard of many others suffering from back spasms while on Xarelto, I believe it was in Drugs.com under Xarelto and back pain. If I come across that link again I will surely forward it on to you.
Trish D