Rivaroxaban started 210921 - struggling with initial side effects

[Zagm82]

My profile gives the back story - diagnosed 48hrs ago. Head spinning with questions and concerns. To start simply, unprovoked PE - started meds and side effects of dizziness and lethargic feeling is worrying - will this dissipate or not, currently working through emotions currently angry with spates of sudden blues then lingering dark clouds then back to anger. Looking for any hints tips to work through this: want the bad and the ugly warts and all to be informed. Still can’t quite recall what my Dr’s said. All I know is I’m on this medication for x3 weeks at double dose then for the remainder of 3mths. Then a further scan on my 3xmates. During that I’m due to have Stomach/Pelvic and Heart Scan. I am clueless to why, and struggling to taking all in. So any insight will be of help. Thanks - G

[Hidden]

Fortunately for us, the NHS are very good about putting the information you need to know on-line. Take a deep breath (well, as deep as you can, I don't suppose you can breathe very deeply at the moment!) and read this information; nhs.uk/conditions/pulmonary... You need all the scans to rule out any root causes of the PE - if it's unprovoked you'll probably be on rivaroxaban for life, but once you are used to it, you won't even notice you're on it. Right now, it's normal to feel very unwell (that's the PEs, not the rivaroxaban!) and a bit scared - we all do. It can take a very long time to recover, but you will recover. Take it slowly, listen to your body, and don't try to overdo things; however, do get up and move around every couple of hours as you are able.

[Zagm82 in reply to Hidden]

Thank you - needed that . Just all a horrible nightmare to say the least and I’m terribly impatient. But, know it’s a must now.

Would like to know the why, but, may have to accept that there may not be any definite answers.

Thanks

G

[Zagm82 in reply to Zagm82]

Yes - NHS is brilliant! Do not know how we’d cope without them. All been brilliant

[moo196]

I suffered an unprovoked blood clot on the brain in 2014 - the CVST that now a lot of people have finally heard of.All of my blood tests came back negative as to any reason why. Was told that about 50% was not possible to say why and ii cracked on with recovery.

I was on warfarin for 2 years with no drug induced side effects of that. It's possibly the illness that is causing your symptoms rather than the drugs?

Anti seasickness wristbands can help with nausea /dizziness.

Do check with your gp/pharmacy for more information if unsure 😊🙏

[Brookiebiceps]

It gets better my friend, breath! Take it one day at a time and tell yourself you made it. Unfortunately the tablets are necessary right now. You'll be ok!

[Zagm82 in reply to Brookiebiceps]

Thank you, love you said breathe! Made me smile for sure. I will just been on overdrive to get my understanding of everything- thanks

[-moods]

Started taking rivaroxaban in March 2021 after Pulmonary embolism due to CS and history of hormonal birth control pills. My D-Dimer levels were at 4439.8. Had small clots in both lungs with lung infarction on the right lower love of my lungs. For the 1st few weeks I suffered from shortness of breath, sharp pain when breathing in on my right side. I also had anxiety and was afraid I would drop dead alone at home. My heart rate would go upto 117 due to anxiety. Over that Period of six months, the pains disappeared in right lung, the back pain disappeared though the anxiety lingered for a bit with the worry on whether I would on blood blood thinners for life or if the clods will be absorbed. It's September 2021 and i just redid my D-Dimer tests, they are still above normal range, so will be on rivaroxaban Abit longer for like three more months. I just interacted with people who had blood clots and never got a chance to take the blood thinners coz they died but am here. So I am grateful for Rivaroxaban, I just had bits of muscle cramps and being sleepy but they disappeared. Now I have no effects. Your anxiety and anger is understandable but I promise it gets better. Hold on, be strong, a pill a day that helps you be okay is better than worrying what if you don't breathe again. Hugs.

[Zagm82 in reply to -moods]

Thank you - just hearing others is helping for sure. Thanks for your time

[janetythomas1950]

Hi Zagm82Sorry to hear about your health problem and anxieties. I too had an unprovoked PE 4 years ago and went through the same worries/anxieties/bleak thoughts etc and all the scans and tests. I was told they do these to see if there's an underlying illness which caused the PE. Having exhausted the tests and found nothing I then underwent further tests and was found to be suffering from antiphospholipid syndrome which causes sticky blood /clots and am now on Rivaroxaban for life. I don't recall having any particular side effects but the anxious thoughts were what I found hard to take. I can only say that with time I have learned to live with this and generally try not to think about it. I'm just thankful to still be here and hopefully protected by my daily dose of Rivaroxaban. Stick with them... speak to your doctor or other health professional about the side effects and your anxieties and I hope with time you'll learn to live with what's happened. I hope all your other tests come back clear or that whatever they find will be something simple and controllable. Good luck and warmest wishes. X

[Zagm82 in reply to janetythomas1950]

Thank you so much that’s very helpful and good to know. Appreciate the time taken

[janetythomas1950 in reply to Zagm82]

No problem. It's a scary time and sometimes in the middle of the night if I'm awake my thoughts can still run away with me but at the end of the day our life is what we make it. Your thoughts will always be there... its how you choose to manage them. There's a lot of life out there to be lived... please enjoy it. X

[Brookiebiceps]

Fyi- I'm on the low dose Rivaroxaban 10mg.. long term!