People's experience of rituximab. Anyone had migraines/headaches?

Hi I'm new to the site. I joined because I was looking for more info on rituximab. I had the second of my first round of infusions just over a week ago now. For the past few days I have been experiencing migraines and feeling sicky. I was wondering if anyone else had had this or similar experience with rituximab. I've had ra for 4 yrs and have secondary sjorgens. Any meds I've tried have always made me feel a bit nauseous at first. But I'm beginning to think starting the rituximab wasn't worth it. I know I should probably ring my rheumatoid nurse but I was wondering how others have found the rituximab.

5 Replies

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  • Welcome to the site

    I have no personal experience of rituxmab. My friend was treated with is a few years ago, also for a different condition (lymphoma).

    He suffered with terrible nausea and sickness. He also was plagued with mouth sores and exhaustion.

    On the plus side it did shrink the lymphoma and made him more comfortable.

    Your doctor can give you medication for the side effects of sickness and headaches, if you plan to continue.

    Good luck

    I wish you well.

    Carole

  • Hi thanks for the response and the welcome.

    I think I will try and get into see my g.p tomorrow to discuss it with him. They said it may take a while before I notice any change in my RA symptoms so the side effects on top are just making me feel even more rotten. They give you a steriod infusion prior to the rituximab but it hasn't seemed to help much after the second infusion. Anyway thanks agin.

    Lyndsey.

  • Hi, I've had 2 cycles of rituximab. I had a migraine during the night of the first infusion of both cycles and then had no further headaches/migraines following on.

    I am presently awaiting for the rituximab to clear itself before I am put on to another one as unfortunately rituximab didn't help me. It did take the inflammation markers down but I didn't see any improvement in my RA so I have been having steroid injections instead at 6 weekly intervals which for the time being are helping much more than the rituximab did.

    When I was having my infusions of rituximab the lady sitting next to me was also having rituximab and had really good results so just shows we are all so different.

    Like everything else we have to take it does take a while to work and get into the system, I think they said to me that it may take up to 3 months before anything seems to improve.

    If you don't get much help from your GP maybe give your rheumy nurse a call as no doubt this has been a problem for someone else.

    I hope you can get your problems sorted and that rituximab starts to work for you.

    Judi xxxxx

  • Hi Giggle

    In the patient information leaflet for rituxmab unfortunately both headaches and migraines are listed as quite common side effects of the drug. As the others have mentioned it would be worth speaking to your rheumatology nurse about how it's making you feel. I hope things start to improve soon.

    Kind regards

    Sarah Kate

    NRAS

  • Hi I couldn't get in with my doctor today. So I've left a message and am waiting for the rheumatology nurse to get in touch. I suppose I was hoping that somebody on here might say they had had a similar experience but it passed after day 7 lol even though i know we're all different. I feel totally wiped out which they said might happen. I'm going on holiday with my husband and kiddos next wk and am bit worried as I don't want to feel like this nxt wk. I sort of wish I'd put it off a few wks but we can't go back only forward :)

    Thanks for all the kind wishes.

    Lyndsey x

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