Abatacept/Headache

Sophie98

Hi,
Has anyone ever been on abatacept and had really bad headaches because of it? The past two Thursdays I've woken up with a migraine, the one I had last Thursday lasted until Friday evening. Nothing I do will get rid of them such as taking painkillers, sleeping or having a cold cloth on my head. I originally thought it was because I have high blood pressure (suspected to be caused by leflunomide) because when I went to my gp on Friday they gave me blood pressure tablets which eased it straight away but I've woken up with it again today and not even taking my blood pressure tablets will ease it. It's still high but I've had higher and I've felt alright. The only thing I can think of is that it's because I take my abatacept injection on a Wednesday evening, either that or it's a coincidence that it has started on a Thursday two weeks in a row. I can't get hold of my Rheumy nurse due to staff shortages because of covid-19 and I was just wanting to see if anyone else has experienced this because I'm tearing my hair out with this pain.

phoenixoxo

Hi Sophie,

I'm pleased to see you've made it to the VA forum 🙂

Abatacept isn't one of the meds I've tried over the years, but I've taken a look at the info provided by NICE and headache is listed as 'Common or very common'. As your headaches are happening the day after you inject, it does seem possible that the abatacept is to blame.

I hope you'll get some more useful responses from people who have tried this drug. In the meantime, very best wishes from Phee x

dreamdaisy

Leflunomide gave me cracking headaches. I persevered for around three months in case they subsided as my body adjusted but they didn't. I was also taking sulphasalazine.

It could be the abatacept alone, it could be it interracting with the BP meds (my biologic gave me high BP so I take three meds for that), it could be your BP meds need adjusting. You need proper medical advice and I hope you can get it sooner rather than later. DD

Sophie98

I've just gotten home from the hospital. My blood pressure ended up at 191/133 and my heart rate was 170 at one point. They gave me oxygen for a few hours which has reduced it down to a headache that's bearable thank god because I thought I was going to go mad. I guess that I'll just have to see if the same happens next Thursday after I have my abatacept to see whether it's that or whether it's just a coincidence that it's happened on the same day for two weeks. I'm definitely going to get in contact with my Rheumy nurse and see what they say. Thank you! X

Brynmor

Hi @Sophie98 I'm so sorry to hear that you are having such problems with abatacept. Yes, headaches are a common side effect as Phoenixoxo says.

Our page on abatacept does say you should contact your health team/doctor if you are having problems. Although you probably are familiar with most of the information, here is the link:

https://www.versusarthritis.org/about-arthritis/treatments/drugs/abatacept/

Best wishes

Brynmor

phoenixoxo

Sophie, I'm sorry you had to go into hospital. Your high blood pressure and heart rate sounds like quite an ordeal. I hope you'll be able to rest and recover over the weekend, and I also hope you'll be in contact with the nurse as soon as possible x