Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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Rivaroxaban

lbug
lbug

Add me to the survival club. 


Diagnosed a week ago with multiple blood clots in my lungs. Still not familiar with all the jargon that comes with being a PE survivor and a lot to learn. 40 years old, diabetic for 20 of those years. I don’t know how long I pushed myself thinking i just had a cold and perhaps just needed anitbiodics. After the diagnosis I was prescribed Rivaroxaban & my recovery journey has begun. 


Joined this group for support and possible answers from any shared experiences others may have.


Anyone else taking Rivaroxaban with experiences they want to share?


First two days starting the medication I was sick. Two pills in I woke up with a nose bleed. It didn’t persist and only happened once. That night after I woke up with an insane headache and only found relief after vomiting. (I started menstrating as soon as I took the blood thinners. Spotting at first then heavy blood with clots. I wasn’t too worried about the heaviness of the menstration or clots as I was initially put on birth control to manage those symptoms. I was only 2 months into this new birth control and didn’t have good results. I was told to stop the birth control immediately upon diagnosis. So hard to tell if the heavy bleeding was from the new blood thinner or a previous condition.) Mild headaches the next few days but overall my body has gotten used to it. I find if I drink lots of water my headaches stay away. Some pain in my leg that I didn’t notice before taking the blood thinners has started since. Keeping it elevated. I am doing my best to keep my sugars under control but still waiting for Drs ok to take my metaformin again. (Blood work was done to check creatine levels after the CAT scan.)

Greeneyes48
Greeneyes48
Sorry to hear about your PE but welcome to the group. I am taking Coumadin/Warfarin. I was diagnosed on 09/13/17. The meds I am on I have to go to the clinic to check my levels but for now I rather do that. You should really call your doctor and let them know what you are experiencing on this medicine you are taking. I have had some leg pain as well. I told my doctor and they want me to record what I am feeling and how long. I am one to speak to my doctors about everything and I write down everything I am feeling everyday even if its something I don't think will matter as we never know. I bought a planner and I write down when I took my meds, what food I ate and any pains or concerns I may have. I do that because by the time I get to the doctors office I may forget but I look back at my planner and make sure to tell my doctor.

Especially that you are a diabetic you should keep an open communication with your doctor and call them with blooding concerns as you are on the blood thinner. That's what they are there for...
Good luck and God bless.
TGrove
TGrove
I was on xeralto then Eliquis. Both gave me horrible side-effects and I could not stay on them. I hope it goes better for you, but my body hated them.
jlynch
jlynch
I was diagnosed with multiple PEs and DVT on 9/18/17, mid-40s. They suspect birth control was the culprit. I, too, am on rivaroxaban and just finished my initial 21-day course (started the 20 mg pills today). I haven’t had any major side effects. Every time I blow my nose, there’s blood, but no major nose bleeds. I’d definitely let my doc know if I had bloody nose. Mine asks each time I see him. I echo greeneyes and suggest you keep your communication open. Also make sure your doc knows about the leg pain, especially if there’s swelling involved.
Good luck!
lbug
lbug
Thank you. I have an ultrasound of my leg today. Every side effect listed I’ve had. More recent the heavy bleeding with horrible menstrual cramps and sausage sized blood clots. My Dr is aware of the heavy bleeding as it started as soon as I started taking the medication however the excessive blood clots and heavy flow has since increased. I am hoping it will lessen. My only question is how long can my body take losing so much blood before I need iron supplements. Waiting for the specialist that I’ve been referred to to schedule my appointment and hopefully get some more definitive answers.
notsopatient
notsopatient
I take progesterone 14 days a month for that and it completely solved the problem.
lbug
lbug
Thank you I will ask myDr about that. This is rather insane.
lbug
lbug
Just an update. I’ve been in the icu for 4 days. I had to check myself into the ER because my bleeding kept getting worse. Had to wait 24 hours for rivaroxaban To leave system. All they could do was give me hormones by IV to strengthen uterus wall to try and slow bleeding. First blood work was ok but by that night I bottomed out and needed a blood transfusion. Blood transfusion was done over night, by morning they discovered my system was stressed and I was suffering a diabetic acid ketoacidosis. It’s been a balancing yo-yo act to get my potassium and magnesium stable since. I am being taken off the rivaroxaban and put on Coumadin but currently on Heparin until they switch me over.. I am also going to be prescribed progesterone.

Overall I from my experience I wouldn’t recommend this drug. The horrible side effects weren’t worth the convenience. Thank you to all that replied it has been helpful and I hope this post helps someone else that may need it later. Hoping to get out of the hospital in 2-3 days to be home with my family.