Headaches on Apixaban?

[Rosh12]

Hi, just looking some advice, I'm new to this. I got multiple PEs in both lungs in February (I'm 31, and they couldn't find an answer as to why or how I got them) .. I was put on Apixaban and had a terrible time with the blood clots, luckily they are gone now, but because they dont no how I got them, I'll be on Apixaban for "life" incase they come back. But from I started the Apixaban in feb I get extremely bad headaches! Iv been to hospital multiple times thinking it's something else which is embarrassing. Iv had ct scans and all Good.. I'm having the worse headache of my life now, with the usual symptoms I get with it, numbness in face and sore heavy left arm, I have this everytime I get the headache, and the doctors and neurologist have ruled out migraines but no idea.. I have asked to come off the Apixaban and pray I dont get another blood clot.. but the doctor is refusing. I'm not coping great atm with these, I have 2 young children and I'm currently in bed now unable to lift my head. Has anyone experienced anything like this while on Apixaban?

[GillyA]

Hi Rosa, I,fully sympathise with your experience and understand what a shock it must have been. Not sure if you are seeing a GP or a specialist, but either way if you are not getting the support you need you might look elsewhere. This could be a different GP in your practice, or alternatively a second opinion from a specialist. While I can understand their advice for to stay on thinners there are several different ones available. If the side effects of apixaban are so bad they are making you think about coming off, they should have an open conversation with you about alternatives or be explaining why apixaban is the only option.

[Brookiebiceps]

I'm on xarelto- have been for 2 yrs. I got this same symptoms when I 1st started- thought I was having a stroke! Went to ER all clear. Its been better since I started the lower prevention dose- can u ask if a lower dose is an option?

[Tofino5]

Hi Rosh12,

I am on apixiban for 6 or 7 years now and it saved me. Please don't stop reading!

Before that I was on warfarin for over 10 years, with severe migraines, so bad that I medically retired a few years early. It turned out that I was sensitive to something in the warfarin, and it made the migraines so much worse. Changing to apixiban was the best thing ever for me.

SO it could be that something about the apixiban is not good for you! Your doctor doesn't sound like he listens very well and he should take your life into account, your children and being unable to function. My guess is that apixiban is the wrong med for you, and he may be the wrong doctor for you. Do you have any ability to see someone else?

Anita in Colorado

[Rosh12]

Hi Tofino5

Firstly thank you so much for your reply. I ended up in hospital on Saturday and only got discharged last night. They reccomend me not to stop or change from Apixaban, they are unsure what's causing it, so it's still a stressful time, I have severe headaches, pain down spine and into my both legs now. But they are unsure as to what's happening. I just hope soon I get answers as its causing me a lot of anxiety and pain. But I appreciate you and your reply, it gives me some comfort to know that there is light at the end and hopefully my body just becomes used to it.

Have a lovely day!

[Tofino5 in reply to Rosh12]

Rosh12 where are you located? Have you been diagnosed with APS? If so, are there any APS specialists near you? All questions. I'm glad you are home from the hospital, and I hope you're not suffering quite as much. Anita

[Rosh12 in reply to Tofino5]

Tofino5 I'm in Ireland, No i had multiple blood clots in both lungs but they are unsure why or how i got them, hence why I am on the Apixaban for life now as they were unprovoked and they dont want to take a risk on them coming back. I am looking into help for pain management as I think from I got the PEs I'm in pain everywhere and dont no what the cause is. I think I was just blaming the Apixaban on the effects I'm having because it all only started when I started the tablets.

[Tofino5 in reply to Rosh12]

I always wonder why it’s so hard to get answers to questions. Sometimes the docs don’t know and won’t admit it, or they aren’t willing to see the issue from your view and don’t want to think about it. Then I think I’m having a bad attitude but we know best what we’re feeling and what we need. Don’t give up seeking answers. If you think this med could be making you sick, they need to listen and help you. Please let me know how you get on.

[Summer133]

Hi Rosh12,

Hope you feel better soon, I too had PE in January 2023, but honestly the pain over time has got better but my left rib, left arm and my upper back on the left side really hurts still sore and I find it difficult to sleep at times, its difficult to cope with sometimes I got my self a v shaped pillow it helps. I also use ibuprofen gel, I have been told by hospital its ok to use.

I have a follow up appointment in January 2024, been on a waiting list for a whole Yr.. they gave me an appointment on my birthday..brill!.. last Yr I was in hospital due to PE on my birthday and this yr I have a follow-up appointment on my birthday. im hoping they say that I'm ok to come off the tablets too.. but let's see.. my PE came out of know where too..ive been told I'm my medication for life.

Get your self checked, if you can get scans get them..

I've had myself checked had mri's and everything is clear..thank God.

I really do hope you get better ..I hope I do too 🙏