Rivaroxaban started 220921 - PE Diagnosis 48hr - unprovoked (at the min)

[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

[Tia4209]

I could not tolerate Rivaroxaban or Apixaban but have been on Edoxaban for 18 months and that has been ok. They usually do checks of abdomen and pelvis in cases of seemingly unprovoked PE I had the abdo/ pelvis scan but it did not show anything of major concern that could have caused my PE. There are some very good support groups on FB both in the UK and USA ( lots of UK members in the group) because they are groups purely for PE sufferers you may get more answers in one of those groups. I do hope you feel better soon it can be a longish recovery both mentally and physically but the majority of people do recover and are much better after a couple of months. The medication side effects can wear off after a couple of weeks but if they don’t, do not hesitate to to ask your GP to try a different med. Rivaroxaban made me very sick and Apixaban gave me stroke like symptoms.

I do hope you feel better soon. xx

[Zagm82 in reply to Tia4209]

Thank you - do you have any recommendations on those groups please. The side effects are awful, I’m not as bad as you’ve described, but interestingly I am slurring words and forgetting things - still putting it down to the shock of everything and have had a pounding headache since coming out of hospital that is gradually getting better. Thanks for your time and comment. Very isolating, lonely when you don’t particularly known anyone going through the same and the barrage of well intended advice from friends and family that seems meaningless if they’re not in the similar situation. Dr Google was of no comfort either! Thanks again

G

[Tia4209 in reply to Zagm82]

It is very isolating but I found the support groups very helpful Pulmonary Embolism Support Group ( Admin Todd Robertson) is well run and has lots of members. There is also Pulmonary Embolism and DVT awareness UK.but I found the USA group really good. Rivaroxaban is calked Xeralto or something like that in the USA and Apixaban is calked Eliquis which can be confusing but they are the same drugs. xx Hope that helps.

[Katinka46]

It is very early days and the majority of people who get PEs make a complete recovery. Bodies go into clot-busting mode and get rid of them. There are a very few unfortunate folk who have permanent damage from the clots, so don’t hesitate to nudge your doctors if you feel that your symptoms are worsening or not improving. But the healing process can take a long time. Like months. Any coughing up of blood should be reported if it goes on longer than a few days. All the best,

K

[Alberta56]

Welcome to the forum. I hope these very informed replies help. There are also BLF nurses to contact on week days.

[Debs_ALUK Partner British Lung Foundation]

Hi Zagm82 and welcome to the Forum.If you live in the UK, your are very welcome to call us and have a chat with one of our nurses for advice . You can contact us on 03000 030 555. Mon- Fri 9-5pm

Take care

Debs

[Zagm82 in reply to Debs_ALUK]

Thank you - I will for sure