Xarelto And Side Effects Versus When To Stop...

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Mike C Says:


I had arthroscopic surgery on my Rt. Knee (meniscus) back on Sept.29, 2015. I am 48, non-smoker, non-drinker and had this same surgery for Miniscus tear prev. 8 yrs. ago. No issues 8 yrs ago on first surgery, but this past one from Sept. 2015- Bingo, all the symptoms and issues when my Rt calf began to swell. I had ortho appt on Oct. 21, 2015, and dr. said he feared a clot. He sent me directly to have an ultrasound, and wow I had 4 clots- 2 in upper leg and 2 in lower calf. I couldn't believe it. I was told to go to ER and I did- Herparin city- they started an IV and began pumping via a syringe- Heparin into my IV. Er doc said he needed to get a CT scan of my chest- suspecting clots in lungs and Bingo again-- 3 clots in my lungs- one on each lower lobe of lung, but biggest concern was the largest one next to pulmonary artery. My wife, who is a nurse, began to cry and become extremely worried. I was nervous also, and shocked as this was totally unexpected. After being in hospital for 2 days, with Heparin, Lovenox shots- and yes they do burn, even though the hospital nurse said "a little stick" it felt like she was lighting a fire on my stomach. After discharge, I was started on Xarelto, 15mg for 21 days. Little issues with it other than, little lightheadedness, and not good sleep. Then I went to the 20mg daily, from Nov. 16, 2015 until today, May 29th. During that time, I experienced "fatigue" and wanted to nap in the afternoon. (I took my Xarelto around 7-8pm nightly) After an hour or two nap, I still felt tired but could function if needed. My sleep hasn't been the same while on Xarelto since I began. I wake up throughout the night, think my wife is talking to me and she is in a dead sleep, wake up early, go to bed around 9ish nightly. My wife, at times, thinks I am anti-social because I go to the bedroom and lay out for an hour, but I promise I am zonked. Meanwhile, my calf would swell and then go down, then swell again- on and off. I dealt with the unwanted issues that comes with Xarelto, especially the lightheadedness- which comes and goes without warning. I may get lightheaded now and not have it again for who knows when? In May 2016, I had repeat Ultrasound, yes DO NOT let your Dr. dictate- "well you don't need it"-- PLEASE have repeat ultrasound in aprox. 6-7 months- my clots were gone, and I had somewhat a peace that recovery was happening. My Dr. said he couldn't look me in the eye not knowing if those clots were there or gone. God bless him for working me up for that repeat Ultrasound. I got me a prescription for compression sock for my rt. lower leg and wow it felt so good, I can't explain it. I only know that I was told to wear it while walking and wear it during the day only. Take it off at night when immobile. I have done this for 3 weeks and I have noticed my leg feels so much better and I have started walking 2-3 miles 2 times a week.. I could NOT do this until I was cleared by my doctor, with that repeat ultrasound. He told me NO running or long walking exercises until I was cleared of those dreaded clots. I had weight gain also while on Xarelto, i gained approx. 20 lbs. and didn't feel good as a result. I wouldn't call it depressed, but it was the blahs sometimes. All I knew was I was determined to be patient, be compliant in taking my med. and when cleared, big daddy was losing weight and changing eating habits, while being thankful for a second chance. As of May 29th, I am stopping the Xarelto, because I have read and almost all show that after 3-6 months, things should have been taken care of. Too, the Ultrasound was negative, I will wear the compression sock as it is wonderful and very comforting to wear- it is beige so it isn't noticable with shorts on. I do recommend anyone with clots speak with your Dr. first and get cleared- but this is my experience with DVT/ PE and Xarelto..... God bless.



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David Says:

Hi Mike,

Thanks for taking the time to share such detailed feedback on your experience with DVT/PE and Xarelto (pre/during/post treatment). Despite all the side effects you encountered, it sounds like Xarelto may have saved your life and was well worth the risk.

I've read on other related discussion threads here that the weight gain may be a result of fluid retention. I don't know if you found that to be the case as well, but many patients reported being able to turn that around some time after stopping treatment. I'm not sure what component of Xarelto causes this to begin with...

Nevertheless, I do want to congratulate you for having the courage and awareness to make those important lifestyle changes you talked about. I'm sure many of us would do things differently if we were given a second chance to make it right.

Best wishes!

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Mike Says:
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It's been now over 6 months since I stopped my xarelto-- and I'm still doing well. I admit there are days that my rt calf still swells but the compression stocking- I wear during the day- has been a godsend.. It really does make a difference. I do walk routinely but NOT long distances--- maybe a mile three times a week..
I tried at first to walk 3 miles X 3times a week- a few months ago-- I paid dearly.. I was so sores not my rt calf/ knee-- I could hardly function with my job. Something else, an orthopedist spoke to
Me about "Osteo Bi-flex" which is a supplement for your joints... I'm not a big supplement t guy but I tried it and wow my joy it pain as well as my swelling has become far and few between.. I take 2 pills daily of this supplement and I swear by it now.. I know there is no secret remedy to solves life's issues, but this one definitely helped with mine. Also I had a ultrasound at the end of November and I am steel clot free except for one small suspicious area on the inside about 2 inches above my right knee. The doctor said he felt that this was not life-threatening and in time one's body should dissolve that entity. I did tell him I was not taking Xarelto anymore . And my vascular surgeon released me saying that I should be OK but I still have in the back of my mind – – is everything truly OK. I have now started taking a baby aspirin one every two weeks and I can honestly say my leg as well as my swelling is almost gone completely. I feel as if God himself who have been watching over me the whole time – – and I have been truly blessed and I pray this article helps others overcome this scary medical condition.

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Lynda Says:
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Thank you for sharing your story! I just experienced the exact same thing after foot surgery two weeks ago. Its been beyond scary! I too am 48 and do not always get the answers I am looking for as I am "too young" and a non- drinker/smoker. I appreciate you sharing you had another ultrasound done to confirm if the clots were gone. I have a long journey ahead and at times I am feeling depressed. I will watch what I eat as I really don't want to gain weight while healing. I went from such an active life to one that just stopped one day! All the best to you in you healing!

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Hugo Says:

Exactly the same for me. Stopping the Xeralto today.

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