I'm in 2nd course of rituximab. I started getting. Really bad head, half way throu. Now 3rd night and head is so bad.

[Amanda63]

How long should I leave it before calling anyone. This is 4th bio, so running out of options. I see rheumy wed. I also have lung probs.

[Hidden]

Ring some one dont suffer it must be reported to some one x

[SaraF]

Hi, I to have been getting headaches with Rituximab, going in for my second infusion monday and they have only just worn off from the first dose just under 2 weeks ago. Apparently headaches are quite common with this infusion so my nurse said when I rang about it. Hope it eases for you soon x

[Amanda63]

Thank you both. Woke this morning still there. I don't feel like sitting up AE. So unless things change for the worse, going to try and hold out till I see rheumy Wednesday. Because I've got lung problems and awaiting to go to royal Brompton, very limited what I can have. I've got........Essential abnorm noted are combo of: emphysema, fibrosis, subpleural nodules, and nodularity along fissures. No suggestion of ra lung ( except rheumy, thoracic and plumologist say it is) but differential raised is respiratory broncolitis with ILD and sarcoid. Ace levels slightly elevated at 67. Transbroncial biopsies from upper lobe showed slight inflammation and granulomatous. But then with rituximab and 30mg pred, surely they are to take inflammation down. The Dr that changed ra to sacoid Dx was junior, but surgery to rota cuff tear is now on hold. Had enough of this disease.

[Victoria-NRAS Partner Moderator NRAS]

Hi Amanda

So sorry to hear how bad you've been feeling. I think Summer is right and that it's worth seeing if you can speak to your nurse before that appointment. Even if other people had headaches that were a side effect and got better, everyone is different, so I think it's worth asking your nurse about if possible, especially if things worsen.

Also, when you speak to them at the appointment, worth getting advice on what to do if this happens in the future. Should you seek medical help or take painkillers, what painkillers to take and whether to have stock of these in advance just in case.

Hope you feel better soon.

Victoria

(NRAS Helpline)