Started Rituximab today

Hi everyone,

I haven't been on much for a while, I blogged a while ago as it was my 2 year ra anniversary and I'd been having a pretty tough few months.

I started back on enbrel in january and initially it seemed to be working but very slowly then I got a minor infection that wouldn't go away after I'd had it nearly 4 weeks my rheumy nurse decided I had to have a week off the enbrel and have antibiotics. Any progress I had made was completely wiped out in that week and 3 more doses of enbrel later I was still getting worse and the rheumatoid vasculitis was really bad again.

I had my 12 week anti tnf review and basically I had no choice but to start riuximab having now failed on 6 drugs and seemingly being resistant to steroids. Fortunately I only had to wait 2 weeks to start the rituximab but they have been horrid as I have had no drugs other that tramadol and paracetamol.

The infusion today took agaes as unsuprisingly for me I had a reaction to it and went bright red and my neck started to itch so they were unable to turn the rate up much. I've got a stinking headache and feel a bit light headed and weird but nothing too dreadful and I'm just hoping that it works and quickly as this flare has now lasted 7 months. I have my 2nd infusion on 10th May so keep your fingers crossed for me (if you can - I can't!)

Hope you're all doing ok.

Mary

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  • Was interested to see your comment as my haematology consultant just today decided that my next treatment is either gonna be Rituximab or G-CSF and I have no knowledge of either. Both apparently require PCT approval (in my area anyways) and she is gonna be in touch to let me know... I too have been through many drugs unsuccessfully but (fortunately) mostly down to them not having an impact rather than adverse reaction - the only one I have had to cease through bad reaction was ciclosporin. My fingers are crossed that this treatment does work for you and hopefully reactions settle down...good luck and God bless x Linda

  • Hi Linda, good luck with your next treatment, I hope it works for you.

  • Can't cross my fingers but I wish you all the best with your new treatment. It sounds like you've had a pretty bad time of it and it's about time you got a break. Hope you feel better soon

    Paula x

  • Thanks Paula, I hope you're feeling ok today

  • Hi Mary,

    I really hope your Rituximab treatment kicks in quickly.

    I too had a slight reaction with the first treatment didnt end up getting home untill around 7.30pm.

    However my second treatment went better and I was home around 4.30 ish.

    Hopefully you will feel bettet soon

    Take care and rest after all your bodies been through a lot with your treatment.

    Julie xx

  • Thanks Julie, I hope the steroids have started to work for you, mine haven't. I don't feel quite right but it's nothing too dreadful, just a bit lightheaded, stomach pains and tired. Have a good weekend.

  • Im feeling a little better today, gone from one extreme thought lol Ive been sleeping for around 20 hours a day but managed to stay awake all yesterday and only slept for 3 hours last nite.

    I felt like you without the stomach pains for about 10 days after each treatment.

    Hope you feel better soon take care xx

  • hiya,

    I had the same with Remicade infusions but they had to stop them, but just like you got things changed. Hope you get the benfit soon and remember to rest now. Axx

  • Thanks, hope you're doing ok.

  • Hi Mary,

    Hope you are feeling ok today.

    After my first rituximab infusion I had a migraine through the night, but not after the second infusion. I didn't have any reaction during the actual infusions.

    I had my infusion back at the tail end of last year (can't remember date at the moment) and don't actually know when my next one will be.

    Because I have sciatica I have also had steroid injections for the past 6 months so I can't actually say if the rituximab is helping me I know that the steroid injection every 3 months has helped. Also on my blood test results they have not shown me my ESR results which would I assume let me see if the retuximab is working on the inflammation. I will be asking for my ESR results at my next appointment with my rheumy team.

    I hope the retuximab works well for you.

    Judi

  • Thanks Judi. I hope the rituximab is working for you and your next appointment goes well.

  • A drop in the lymphocyte count usually indicates that the Rituximab is starting to work. Be warned, my rheumy told me that it can be up to a couple of months before you notice the full effects of the treatment kicking in - sorry. Having said that I have had 3 cycles of it and for me it is very effective. Hope you feel better soon. Take care, Wendy x

  • Thanks Wendy, my rheumy nurse said it could take up to 4 months to work so I'm not expecting any miracles. I hope it works as well for me as it does for you.

  • I do so hope that this is the drug for you, and it starts to work very soon. Good luck. Polly

  • Thanks Polly, I hope it works too, I'm not sure how many there are left to try!

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