need some answers :)

I'm due my 2nd infusion of Rituximab on Tuesday, is it ok for me to go outdoors and mix with people? I'm going stir crazy in the house , my mother is taking me out for an hour each day, for a drive etc. I know not to go near people who are ill, coughs , colds. ( Im a nurse)

I dont know what to expect from this drug!! I feel better as in the joint pain and symptoms are much less but still get extremely tired mid / late afternoon, I know that feeling from my last flare up.

I'm due to be going to Tenerife for 6 days at the end of February, Stupid question but , should I go If I'm feeling ok ? What about insurance? will I get it and not at some horrendous price? Should I take a face mask in case I sit next to someone whose got a cold etc, ( I dont mind looking daft but dont want to scare other passengers)

Mooka, when you say a few weeks to kick in , what do you mean by that? Apart from having a sneezing fit with the infusion and one night of awful abdominal pain, I feel ok!

What kind of things can I expect, is there a common side effect felt by most people. Yes I know we are all different but I need reassurance.

What about work, my colleagues understand I'm ill but how long should I be prepared to be off sick??

Lots of questions, hopefully lots of answers



4 Replies

  • Hi

    I had 2 infusions of Rituximab in 2013. I had no side effects except for feeling a bit tired for a few days afterwards. It took a few weeks before it started to work. But I certainly wasn't confined to the house with the treatment. I returned to work once my symptoms started to improve about 6 weeks. I work in a children's nursery so impossible for me to avoid bugs and germs.

  • I had 4 infusions & suffered no ill effects whatsoever. I was not advised to shut myself away . I carried on with my normal life & even went on holiday to Lanzaroti soon after my last infusion. just go out there & enjoy life again

  • I've had several infusions of rituximab and never stayed indoors, I've just avoided any friends who were ill (a precaution I always take). I've also been to Tenerife and recently to india! Insure and go are reasonably priced but you need to phone them to get cover (I have GPA wegeners). I think you'll find a list of other holiday insurance companies on the vasculitis uk website.

  • My next rituximab infusion is in ten days time, and I've booked cinema tickets for the following week. I know I'll feel a bit cross and tired for a few days after the infusion, but need a goal to aim for and cheer me up! We went on a holiday a couple of weeks after my last one, but that was in the UK so there was no insurance needed.

    Otherwise I do the same as DevonLottie and just avoid anyone who is ill. I've also been advised not to swim as I picked up a couple of infections when I tried to go to exercise classes at my local pool. So, if you are feeling fine, get out and about now and then have a wonderful time in Tenerife!

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