Pain in leg muscles, tendons, and knees after Bilateral PE on Eliquis

Posted by smasneri @smasneri, Jul 6, 2023

One month after massive bilateral PE and taking 5 mg twice daily. Experiencing constant and continual pain in legs, mainly behind both knees, in tendons, and some muscle flare ups. Have had two ultrasounds and a CT scan on both legs since I was diagnosed June 6 and they are negative. My D Diemer is .43 and all vitals strong and regular. Echocardiogram shows no strain on heart. We have ruled most everything else out. No trauma to legs, no cuts, bruises or strains. Is this related to the Eliquis? My local hematologist wants me on it for another 5 months, I won’t be able to make that unless this subsides. Anyone else out there having this issue? Recommendations?

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Profile picture for ruth36 @ruth36

@michaelalexander
Hi, i’ve been going back and re-reading messages about Eliquis wondering how you made out are you still on it or were you switched to another blood thinner?
After my heart attack, I was taking Eliquis for 15 months and month after starting it I noticed my legs were stiff in. It was hard to walk since then they’ve been getting worse. I had x-rays done and was told I have arthritis in my knees, but my issues in my legs are more than just arthritis in the knees. I find it very hard to walk around and I feel the same way. It just keeps up. I will be in a wheelchair but a few months ago I told my cardiologist I wanted to get off Eliquis. I mentioned to her about the side effects with my weakness and stiffness in my legs, but she denied Eliquis had any side effects like that so she put me on Warafin.. well, that was just as bad. I was on it for three weeks and of course I had to go twice a week to get blood work done so they could regulate the dosage but after three weeks on it I also had stomach issues most every day I would feel nausea and I had hair loss. I told my doctor I wanted to go back on Eliquis. I really didn’t know of any other option so I’ve been back on it now for almost a month and it seems like my legs are worse. I
Know people that had heart attack or bypasses and the only thing they take for their heart is a baby aspirin. I really don’t understand why I have to stay on this blood thinner. I thought it would only be for a year.

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@ruth36

I took myself off Eliquis yesterday after consulting with my GP. Back on baby aspirin. Not looking for another heart attack but the side effects were serious and I do not respect the supposed 'expertise' of some of these so called specialists. Good luck and maybe get a second or third opinion about ditching the pharmaceutical blood thinners and just doing aspirin. Not MY advice, just a suggestion.

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Profile picture for robert1957 @robert1957

@dtag53

Echoes my experience. I took myself off yesterday after talking to my GP. The 'cardiologist' I called never got back to me, though her assistant told me she'd tell her it was 'high priority.' My knees feel/felt like they were ready to pop, hands hurt worse than ever, headaches, neuropathy in my feet. Not looking for another HA, or a stroke, but don't want to take some crap that makes me feel worse than ever as some kind of 'tradeoff' to 'protect my heart." I'm back on baby aspirins for a blood thinner. Good luck!

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@robert1957 Thanks. I had another Doppler on a clot that hasn't budged since November, they don't think it will. I, too, will take a baby aspirin. My headaches have to stop soon! I have an appointment with a vein Doc on July 13th, they said he's not a fan of long term blood thinner use, so I will pray!

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Profile picture for robert1957 @robert1957

@ruth36

I took myself off Eliquis yesterday after consulting with my GP. Back on baby aspirin. Not looking for another heart attack but the side effects were serious and I do not respect the supposed 'expertise' of some of these so called specialists. Good luck and maybe get a second or third opinion about ditching the pharmaceutical blood thinners and just doing aspirin. Not MY advice, just a suggestion.

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@robert1957
Let us know how you’re doing….
Why were you put on it in the first place? Afib?
I was told I had a major heart attack ( Dec 2024)
I don’t want to live like this til it’s my time to go, this isn’t living!

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Profile picture for ruth36 @ruth36

@robert1957
Let us know how you’re doing….
Why were you put on it in the first place? Afib?
I was told I had a major heart attack ( Dec 2024)
I don’t want to live like this til it’s my time to go, this isn’t living!

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@ruth36

I'm doing okay. I had a 'minor' heart attack five years ago (whatever minor means), manifesting as super rapid heartbeat of about 240 that wouldn't stop. Two stints, put on metoprolol (a beta blocker), Atorvistatin and a baby aspirin. Then this spring, the cardiologist switched me to Rosuvastatin (strongest statin on the market) plus Eliquis (blood thinner). I do have Afib, plus microvascular disease, Supraventricular tachacardia and hydortrophic cardiomyopathy. Too much fun. But I switched back to Atorvastatin and ditched the Eliquis, as the latter was causing all the symptoms others mentioned here - weakness in knees, cramping and muscle pain particularly in the calves, neuropathy in the feet and toes, headaches and general malaise. I don't care what the 'cardiologist' says about denying that it's the Eliquis, after reading so many complaints here. Just three or four days after ceasing that (and going back on two baby aspirins a day), I already feel better. I don't want a stroke or another HA, but that stuff was making me feel lousy. So, I'll take my chances, and further consult with my own GP this week. I will not be going back to the previous cardiologist, not impressed. She was 45 minutes late for a zoom call and spent the first five minutes after that saying "Let me review your history." Then she asked if I'd ever had stints, material we'd previously covered and that was already in my records. Anyway, good luck to you, and to me, and to anyone else who has to deal with the American health care system!

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I am having the worst leg pains since taking Eliquis for almost a year . Last year I walked my dog 3-5 miles a day and now I can hardly walk to the car and back ! I’m trying to tell the Dr I don’t have AFIB if my heart monitor comes back 97% normal sinus rhythm and 3% AFIB (two tests) . He says I need blood thinner cuz I had a TIA a year ago . Low dose aspirin? He says age,gender,genetics, and diabetes are factors . I want off this RX I can’t afford . Money or health wise !

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Profile picture for ccolson @ccolson

I am having the worst leg pains since taking Eliquis for almost a year . Last year I walked my dog 3-5 miles a day and now I can hardly walk to the car and back ! I’m trying to tell the Dr I don’t have AFIB if my heart monitor comes back 97% normal sinus rhythm and 3% AFIB (two tests) . He says I need blood thinner cuz I had a TIA a year ago . Low dose aspirin? He says age,gender,genetics, and diabetes are factors . I want off this RX I can’t afford . Money or health wise !

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@ccolson I've been on Eliquis for a little over a year now. It is a horrible drug. I don't have pain in my legs, but they have become so weak I am constantly afraid of falling. Curbs are too much. There has to be a better way. As far as the ridiculous co$t, I ended up going through the Canadian Pharmacy Store. Google them and learn about them, then have your doc send them a prescription. Then you place your order. It was very easy. My last order was about $70 for a three-month supply, whereas in the states, my insurance said it would be about $800/month. Good luck and let us know how you are.

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Profile picture for shepsiccle @shepsiccle

@ccolson I've been on Eliquis for a little over a year now. It is a horrible drug. I don't have pain in my legs, but they have become so weak I am constantly afraid of falling. Curbs are too much. There has to be a better way. As far as the ridiculous co$t, I ended up going through the Canadian Pharmacy Store. Google them and learn about them, then have your doc send them a prescription. Then you place your order. It was very easy. My last order was about $70 for a three-month supply, whereas in the states, my insurance said it would be about $800/month. Good luck and let us know how you are.

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@shepsiccle
Wow, $800… do you have any prescription insurance plan?
I have well care and unfortunately Eliquis is under the tear that has the $615 deductible . It’s weird because with my prescriptions I always like to get it monthly that way I can remember When they need to be refilled, but would be most recent Eliquis prescription my doctor gave me she wrote for three month supply and it average to be only $62 a month if I were to get a one month supply, the cost would’ve been a lot more so I don’t understand how these companies charge.
I’ve been on it for a year and a half originally it sounded like I’d only be on it for a year, but I don’t know how much longer I can stay on it. My legs are very weak. I can’t stand for very long at all. It’s a job just to go grocery shopping even with the cart holding me up. . I’ve never been a couch potato and there’s so many things that I would like to do and if my legs weren’t bothering me, I would feel pretty good but they are dragging me down. At night I am exhausted just from walking around during the daytime to do every day chores.It started a month after I was on it, but I didn’t associate it with the medication, but when I did mention it to my cardiologist, she didn’t believe that it would have that kind of side effect.. I’m also on a cholesterol med 20 mg at night but when I looked up any side effects with that that also has weakness in muscles so I really don’t know for sure which medication and I’m afraid to stop one of them for like a month to see if there’s any difference at this point I don’t think my cardiologist would agree to it, but I do not want to have to be on the Eliquis for the rest of my life

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Profile picture for ccolson @ccolson

I am having the worst leg pains since taking Eliquis for almost a year . Last year I walked my dog 3-5 miles a day and now I can hardly walk to the car and back ! I’m trying to tell the Dr I don’t have AFIB if my heart monitor comes back 97% normal sinus rhythm and 3% AFIB (two tests) . He says I need blood thinner cuz I had a TIA a year ago . Low dose aspirin? He says age,gender,genetics, and diabetes are factors . I want off this RX I can’t afford . Money or health wise !

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@ccolson

Before this discussion, I never knew that Eliquis could cause leg pains. Thanks to everyone here. I started it after a PE that put me in the hospital for a week. (I also have afib and my vein doctor and cardiologist agreed on Eliquis). Occasionally I get new leg pains which I attributed to getting older or maybe not enough exercise. Thankfully those leg cramps occur infrequently enough that for the moment I will stay with the Eliquis.

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Competitive cyclist for over 30 years years, had a slight mishap 11 years ago at a training race and developed a small blood clot in my left leg. Was on Xarelto for six months, after the six months did another sonogram and the clot was clear so I was taken off Xarelto and put on baby aspirin.
11 years later I developed another one behind my knee. Being 64 years old and still very active I had no idea how this developed this other than “over training.“ during the winter.
Now on Eliquis 5 mg twice a day and feel absolutely horrible. The pain I am experiencing in my leg, shoulder, wrist and knee is borderline unbearable. I try not to take Tylenol too much as I value my kidneys. My blood work and cardiac testing are 100%, no issues at all.
Not sure if I want to stay on Eliquis at all due to the side effects.
Looking for a sensible answer as I do not trust the doctors anymore.

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Just joined after reading about leg pains and Eliques. Yes, me too and miserable. I am now using Epson Salt packs to alleviate pain but it is short lived. Ice and a heating pad also helpful for a few hours. Mostly walking a few miles a day wont work for the pain after 3/4s of a mile. Any suggestions?

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