I have been on Xarelto since switching from Cumadin a month ago and about a week ago I had sharp pains in my chest then three days ago I had an irregular fast heartbeat on the lower right side of my heart for about 30 minutes. Once that was over I had wheezing in my chest for the next 12 hrs with severe fatigue and was very exhausted feeling lots of pain in my chest. I was wondering if anyone has had a blood clot while on xarelto. I am having lots of tests done to diagnose what happened, but I believe it was another blood clot due to my symptoms
Has anyone experienced a PE while on Xarelto?
Question posted by jovifan on 24 April 2013
Last updated on 1 April 2022 by tmiller1561
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
17 Answers
tmiller1561
1 April 2022
My daughter experienced a PE from surgery and was placed on Xarelto for 6 months following that PE. The week before she was supposed to check in with the doctor to come off of the Xarelto she threw an unprovoked PE. So because she had a PE while on Xarelto, and this was now the second PE, the hematologist took her off of Xarelto and has now put her on Coumadin. So, it can and does happen. Listen to your body! Doctors do not know why her body threw another clot but the doppler confirmed she did have a second clot/PE, and while on Xarelto. Now she has to monitor her INR weekly and what she eats more closely as it impacts her INR level.
mistylites
30 Jan 2019
Yes. I got my third PE while on Xarelto. I at the ER again today and now I have to on my right lung!
Maryannew
30 Sep 2018
I was diagnosed with my first PE In July of this year. I was told I had multiple blood clots on both lungs then 5 weeks later I didnt take the xerelto for 5 days which was stupid of me but as i felt depressed at the time It was the last thing on my mind. Then Again 3 weeks later I had 1 more episode and now as we speak I think I may have more don’t listen to the symptoms on the nhs website the only symptoms I had was the first time was the most severe pain when i breathed in and pain in my arm and shoulder I was not out of breath at all and it was multiple clots it also hurt when i turned on the same side. The other episodes there was just pain in my left sided chest and pain when I breathed in so you can’t always rely on the evidence of google symptoms !! Sorry this post is so long but yes you can still clot while on this medication .
Bbrit1002
14 Sep 2018
Did you end up getting any resolution to this? I had a PE 23 days ago and was put on Xarelto. I had a hemorrhage and pretty severe damage in my left lung as a result. I was feeling almost back to normal, and then, on day 21, I had to switch my dose from 15mg twice a day to 20mg once a day. Since I did this, I’ve been experiencing chest pain and difficulty breathing similar to when I had my PE. Trying to see if anyone else had experienced any changes in pain when going to a lower dose of Xarelto. Reading all of these responses about people getting clots while on it is scaring me a bit.
jchall62486
14 Sep 2018
Please take this very seriously. When I was dropped to 1/day 20mg I stayed experiencing the same issues. Eventually, I blacked out one day after experiencing an irregular heart beat. I went to the hospital and that’s when they found dozens of PE’s in my lungs (I was originally treated for only 1 PE and a lower DVT).
Bbrit1002
14 Sep 2018
Thanks for your reply! That sounds horrible. I’m sorry that happened. My only hesitation is I’m wondering if the pain had anything to do with the fact that I did a little exercise this week for the first time since I had the PE, or if it’s something else going on. Both my hematologist and pulmonologist said exercise would be okay after 3 weeks on the thinners and to listen to my body. So when I felt great earlier this week before switching doses, I didn’t think it’d be an issue. I’m going to monitor the pain over the next day or two and if there’s any increase or no change I’ll contact my doctors. Thanks for the reply!
jchall62486
14 Sep 2018
I didn’t feel much in the way of pain but I did feel shortness of breath even when I wasn’t doing anything. The shortness of breath was random and would happen when I was doing something as mundane as riding in the car. Like I said, I did not experience those issues until I was dropped to 20mg/day.
Bbrit1002
15 Sep 2018
Yeah it feels too convenient that I only started experiencing this again since I switched the dose to 20mg.
CindeeN
9 July 2018
My husband was on Xarelto for over a year. He died September 3, 2018. Cause of death, blood clot. In my opinion it doesn't work in all cases. It gives a false sense of security.
Dkrakoff
22 Oct 2018
I’m so sorry for your loss. I had multiple clots in both lungs in December of 2016 and have taken xarelto since. Did your husband have symptoms of the new clot?
Sambelina1
15 April 2018
Hi I’ve just found this thread. I had severe bi lateral pulmonary embolism in June 2016. I was active, I worked full time & went to the gym 3-5 times a week. There was no reason for the clots so was put on Xarelto/Rivaroxiban for 6 months initially then life. A few months ago I was changed from 20 mg to 10 as I was told this may be a reason for my complaint of not being much better. I lost my job, no longer go to the gym, need a ridiculous amount of sleep & I’m getting more chest pains now very similar to the I initial ones. I had a heart scan last week for pulmonary hypertension but I’m convinced after seeing these comments I have another clot...
Taura5278
14 June 2018
I feel your pain. I am 40, have been active my entire life and have had two PE's, both unprovoked. I was put on 20mg of Xarelto 2 months ago. I too need a ton of sleep and I'm having really bad back pain that I am getting a CT scan on this week. I now have high blood pressure when it's been low my whole life. I've also been having chest pains as well but feels more like a heavy pressure than a sharp pain. My heart looks normal. I don't understand. I'm glad you posted, at least I know I'm not alone.
Wirelessmiss
17 June 2018
Taura- I was on xarelto for 6 weeks, sleeping an extra 4-5 hrs a day and such severe back and joint pain (all new symptoms to be never experienced in my life) that I couldn't get up off the floor without help. I usually sit on floors, climb in things, crawl under things. It's my nature. But I was basically immobilized. I switched to eliquis, frank a bunch of tart cherry juice in case it was gout symptoms (recommendation from someone who had gout) and I was able to move again with five days. The only lingering issue is that my left knee is still sore and I'm just being really careful. Still not sure if it was the drug change or the tart cherry juice that changed the pain, but since I switched meds I'm not taking a two hour long midday nap on the office couch anymore.
Akba
20 Sep 2018
I also had severe bi lateral pulmonary embolism in December 2017 with no reason. I was put on xarelto 20 for the first 6 months then on 10 for the last 2 months. I am actually very happy with the medication. A few weeks ago, i had chest pain (more like chest heaviness) and shortness of breath, but ct scan showed clear lungs. So I think maybe Im just being over concerned thats why i feel the pain that is not actually there.
Firm1
4 April 2018
I've had a heart attack and then blood clots 4 years later. It sounds like blood clots to me. I went through the exact same thing when going through the clot issue. I had 5 in my right leg and 1 in each lung. The ones in my lungs were sizeable.
Juliacbrown
14 Jan 2018
I had a DVT due to an injury. In the hospital the skipped Warfarin and put me on Xarelto right off the bat. Two days after discharge I had another DVT and a PE. I ended up spending an additional 8 days in the hospital and was switched to Warfarin.
Kherrigel
29 Nov 2017
I was on xerelto for approximately 2 years, did not miss dosages, watched my diet, no drinking, smoking or unprescribed or over the counter drugs or supplements, I went to the ER 29 Sept.2017 with familiar pain in my leg and they found a look clot in my calf, thigh and abdomen, the Doctors diagnosed this by ultrasound, not only once but a couple of times on different machines... by the way I also got a blood clot when taking plavix, it absolutely does happen.
Jill2010
3 Oct 2017
Hi, I've had a pulmonary embolism on Xaralto. I've also had DVT's while on Heparin/Tinzaparin while also taking aspirin, and for some reason I'm particularly unstable on Warfarin even when I vigorously plan my intake of Vit K foods. I have no known clotting disorders, but have had eight clots now. Five episodes of clotting. First episode was three clots, one in an artery, when I was nineteen. My leg was black, and stayed grey and swollen for months, even after the blood thinners. In those days, they didn't remove the clots like they do now. The last clot, the PE, was particularly worrying. Mostly because my D-Dimer was negative, and they ran it THREE times - negative each time. Had to have a contrast dye CT, and thank goodness the emergency doctor knew enough about me from my chart to be smart about it. We made the decision mutually.
God bless smart doctors who listen to patients!! I have had my Xaralto increased to 30mg/day, and I feel like I may be developing thrombophlebitis in a peripheral vein, in an area of previous clotting. I will have it checked tomorrow. I'm generally right about my clots - I've diagnosed all of them myself before going to the doctor. I've had members of my family pass away from clots (Thrombotic Storm Disorder). My sister died of clots when she was 32, and my daughter had clots when she was less than a year old, resulting in her developing a disability and cavernous transformation of the portal vein. I'm an active person - I swam 40 lengths in the pool yesterday, I'm at ideal/under weight, and I eat a ton of fresh fruit and veggies. I'm as healthy as a horse beside for the clotting. I don't think it was a fault of Xaralto - having clotted in strange situations, on various anti-coagulants including Heparin, I have to say that there's a lot we don't know about clotting. In time, as we understand clots more, we'll be able to be more specific about medications, and matching medications to the type of clotting disorder. I hope that the study at the University of Miami Hussman Institute can one day shed light on strange clotting disorders such as Thrombotic Storm Disorder.
jchall62486
8 June 2017
Yo so I got put on Xarelto for a PE which resulted from a DVT. Three months later, I was rushed back to the ER after experiencing what I think was a clot passing through my heart. There, they found MULTIPLE PE's now in both lungs AND a DVT in my arm that they think was there when they found the original DVT. I have no idea why it's failed me and apparently no one else does either. My APC resistance was 5.7!
Masterfinisher
4 May 2017
I have been on Xarelto for 2 years after being taken off of 2x daily lovenox injections after experiencing Coumadin failure and clotting at 3.7 inr at 15 mg a
day.
I have been feeling very sluggish, developed a venous ulcer and noticed swelling in my left leg. Ended up in the er legs very swollen, in pain, barely able to walk 50 feet, turns out I'm clotted up to my groin... Dr switched me to pradaxa yesterday, been 24 hours and no improvement I'm getting worse. So painful!! If it wasn't for my faith in Jesus Christ I'd say I was a little scared... God is good... Praying for you all!!
Kara2016
3 Nov 2016
I have been on Xarelto for 4 weeks now for a DVT after a sclerotherapy. My doctor told me I should be on Xarelto for 3 months total. My blood clot is attached high in my tigh. I now have pain in my lower leg. I fear another blood clot. I'm 40 years old and do not genetic predisposition for clotting. I was told to wear progressive compression stockings 20-30 every day. Today I did not wear them since I was home and thought I don't need them. Now the pain concerns me a lot. Also, I'm afraid what will happen to me after I get off Xarelto??
victor malwa
13 Oct 2016
I have been on Rivaroxaban 20mg a day for a 16-18 months. Yesterday, i found out that i have new clots developing again in the same places- around the knees. The hospital also want to do a ct scan to determine if i may have cancer causing the clots despite taking blood thinners regularly. In the meantime, I have now been put on clexane 85m and warfarin a day. They want to move me to warfairn due to the costs and lack of anti bleeding effect with rivaroxaban.
Has anyone been in similar situation before?
Badbowler111
17 Oct 2014
After 2 years on Xarelto I ended up wirh blood clots again too. My doctor switched me back to Warfarin which still hasn't stabilized my blood. But still nobody can answer my question as to why after 2 years the Xarelto stopped working!!
aramanarao
18 Oct 2014
It is possible to end up with blood clots even after 2 years on Xarelto. I am surprised that your doctor switched you to Warfarin after the clots were detected. The correct procedure after detecting clots is to dissolve the clots (with Heparin) first and then start the Warfarin Therapy. Warfarin cannot dissolve clots; it can only prevent the formation of new clots (provided the dosage is titrated based on F/N readings of PT-INR. Suggest consult with a Hemetologist immediately.
adslparts
15 Dec 2014
I had another PE but I was skipping days on my Xarelto. It's so expensive and I can't tolerate warfarin. I feel I have permanent damage from my PEs. Some days I just can't breathe and my ears feel plugged up. I am on unemployment and have no insurance and according to healthcare.gov I made too much money this year (2014) for assistance even though I haven't worked since June. Some day I just wish I would not wake up.
James
gaterbait44
15 Dec 2014
Hi James, I don't know you but you must sometimes seek help from uncommon sources. I have felt like giving up more than once and I have realized that I always have a place in society. I don't go around volunteering for stuff, butt I find something worth fighting for every day. I've had a spinal injury since 2004, and schizophrenia since 2008. Depression has been lurking at my door for quite some time. I stumbled across this site looking fort interactions with xarelto as I had a PE a few days ago. I don't intend on giving up and you must not either. Best wishes.
adslparts
15 Dec 2014
best wishes on your recovery. It's been a struggle for me for the last year. I had to give up my job because of it.actually they were nice about it and let me go so I could get unemployment. I suffer from depression also but it's not everyday I wake up that way just sometimes.
aramanarao
16 Dec 2014
The problem with anticoagulants is that you cannot afford to skip them for two days in a row, because in this interval, clot formation can occur for a wide variety of reasons. Also the regimen for anticoagulants demands that you take it (the right dose) at the same time everyday - preferably midway between lunch and dinner- and minimise the consumption of Vit-K rich greens/fruits.
iggyig
23 Jan 2015
Someone commented that the correct procedure after a clot is to first use heparin to dissolve the clot then warfarin therapy. The part that is incorrect about this is that heparin does not dissolve clots, It is simply another anticoagulant that has near instant therapeutic affect (unlike Warfarin which takes a while to build up in your system to a therapeutic concentration). With new anticoagulants Xarelto, Pradaxa, and Eliquis, it is probably not necessary to use heparin, however, because heparin and warfarin have the longest history of use it is considered the "standard of car". I had my second DVT a year ago and went directly to taking Xarelto.
It is quite possible to get a clot while taking any anticoagulant. They are not perfect, and they are all risky and problematic. The only real benefits to the new novel anticoagulants are: 1) routine testing not necessary, and 2) consistent anticoagulation (as long as you take it properly) that is not affected by diet. The big downside of novel anticoags is that there is no approved antidote, so if you do get a severe bleed (particularly internal), you could be in a world of hurt (think stroke). The biggest problem with warfarin is the inconsistent anticoagulation. Drink a beer and your INR can increase tremondously. Eat some kale and it can decrease suddenly. The advantage of warfarin is that it has an easy antidote - Vitamin K. I personally have opted for Xarelto at present for the easy dosing and anticoag consistency (which in my mind brings some level of risk reduction - on the on the hand if I'm injured, I'm stuck with slow coagulation for at least 24 hours without an antidote). The fact is none of these drugs, like all drugs, is good. The only thing that is good is avoid ever getting into a situation where you have to take them. Unfortunately, while I cannot prove it, I believe the vast majority of cases of non-genetic, idiopathic, acquired thrombophylia are healthcare induced. Exposure to iodine contrast agents is one possible vector as well as the use of heparin. (yes, heparin, even though it is a powerful anticoagulant, can induce clotting in some cases, and I believe it can actually cause permanant thrombophylia. I, however, do not have the data to prove it).
iggyig
23 Jan 2015
Forgot to add: the only thing that can dissolve clots is tPA (Tissue Plasminogen Activator - an enzyme). Your body makes tPA and that is one of the things that takes the clots apart once your on blood thinners. tPA is also made synthetically (or at least bio-medically for lack of a better word)and it is the wonder drug for people with clots in arteries (coronary thrombosis, stroke, etc) who could die or suffer severe function loss without it. Unfortunately, it carries great risk too and could cause bleeding, hence it is not administered except in those cases where someone deems the benefit far greater than the risk. It is also not that uncommon to be used these days to dissolve venous closts in large veins above the knee where the tPA can be essentially trapped in the area of the clot and kept from circulating to the rest of the body. About the only time it is adminstered in a way that it will circulate through the whole body is for treatment of stroke in the 4 hour window after the stroke symptoms appear.
Jayfeather
22 April 2017
If you go to Xarelto.com website you can sign up for the $0 copay card. It provides you up to 3400.00 in a years time of prescription coverage for your Xarelto prescription. My first prescription, the starter pack was going to run me $668.00. I got for $0 with that card. And I've gotten my second months prescription for $0 as well.
CHeck it out!
Soniarita
14 Nov 2017
I would like to take xarelto evey second day been on it for at least 7 year.
Soniarita
14 Nov 2017
I would like to take xarelto evey second day been on it for at least 7 year.
besthiker
20 March 2018
All anticoagulants reduce the risk of new clots but the risk never goes to 0. I read one study where the risk for those not taking anticoagulants vs taking was 25% to 4% for a new clot in 3 years. That was one study and had older people. I'm trying to find better numbers.
As far as I know, the risk is approximately the same for all oral anticoagulants. For those who can't afford the very expensive newer ones, coumadin (warfarin) still works. You have to get your blood measured occasionally (a pain) but it's very cheap. It reversible too unlike a few of the newer ones. It may have slightly higher bleeding risks. There have been some recent studies that show aspirin can work too patients would need to consult with their doctor.
Related topics
pulmonary embolism, tachyarrhythmia, atrial fibrillation, deep vein thrombosis (dvt), pain, deep vein thrombosis, deep vein thrombosis - recurrent event, pulmonary embolism - recurrent event, prevention of thromboembolism in atrial fibrillation, xarelto
Further information
- Xarelto uses and safety info
- Xarelto prescribing info & package insert (for Health Professionals)
- Side effects of Xarelto (detailed)
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