Help with Rituximab?

I am due to start the iv treatment Rituximab, as the other steroid sparing drugs have not stopped the lupus from killing off my white cells, and I am not coping well with the steroids themselves. I was given a leaflet which detailed a few side affects, but when I looked into it more online, there are reports of deaths and severe reactions etc, and now I am petrified. Is there anyone else on this at the moment? My Rheumatologist didnt tell me it could cause serious problems, so I have agreed to go ahead but now I am really worried.

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  • Hi Karen

    I have had three lots of rituximab, the first lot in Jan 2010, then Sept 2010 and then Oct 2011.

    The plan is for me to have it annually as a maintenance treatment.

    The first infusion is started very slowly (if you get to the ward for 9 you would prob be able to leave after 4). The reason it is done slowly is that it starts to kill off the b cells straight away and you can have a reaction to this, so it is done at a very slow rate. I have found that every time I've had it I've had to get in the bed and lie down about three hours into the treatment, my blood pressure drops a bit and I feel tired. But this passes within an hour. The second infusion (normally 2 weeks later) can be done faster as the first one should have got rid of most of the b cells.

    My daily symptoms are bad headaches and unfortunately rituximab can give you a headache for a couple of weeks and i feel tired for a few days but I haven't experienced anything else.

    On the last round there was a lady who had a bit of an allergic reaction but they stopped the infusion and within an hour she was fine and it was restarted when I've gone there has been at least five people (including me) and no issues. One man there last time was on his 7th lot, he was having for rheumatoid arthritis.

    I hope that my experiences can make you feel a bit better and try not to worry, rituximab has helped lots of people and I'm sure that others on this site will answer and be able to help out your mind at ease.

    Take a good book or something with you as its a long day, did they tell you to take some lunch?

    Take care

    Louise

  • I was the first person in Northern Ireland with lupus to get rituximab and I have had it 4 times in total ..... the first time I had the most fantastic 6 months but did not sadly did not get the same effect from the other treatments. I took a rash with the 4th dose in between the 2 doses but that was the only thing with me and remember I was going in blind. I know a few people have had reactions but whilst you are getting the rituximab you are being monitored the whole time. Those that suffer side effects are so few in comparison but the choice is ultimately yours. Personally I am prepared to take a chance on any medication that might help. So lots of luck x

  • Thank you both so much for your replies, it has really reassured me. I think I got a bit overwhelmed with some of the information on the internet, but actually hearing from people who have had it has made me feel much better. I think I would like to go ahead with it, as I think it is probably the best way forward for me now. Its good to know that the hospitals monitor it so closely too, so thank you both again x

  • I am booked for my second round on 6th Feb. I had no problems at all with my first dose last August, felt a bit wiped after it but I was significantly poorly anyway so hopefully won't be floored so much this time.

    From your photo I assume you are owned by a blenheim cavalier, me too, our lord and master is called Bob and keeps me sane! good luck it's worth trying and everything has a risk even eating burnt toast if you read all the advice!!

  • Hi Karen

    I hope we have helped you and good luck with the treatment just remember it could make you feel fairly tired for a couple of weeks but hopefully in the long run you will feel better.

    Take care

    Louise x

  • Thanks Louise, yes it has definitely helped to have some replies, thanks again.

    mimcd - Yes my little Cavalier is called Maisy, she is 6 years old and my constant companion. Whenever things are tough, I only have to look at her and she makes me smile. They certainly are a royal breed aren't they, wanting only the very best, and why not, they are definitely worth it! Thankyou for your comments too, I have decided to go ahead and give it a try. Best wishes.

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