need some answers :): I'm due my 2nd infusion... - Vasculitis UK

Vasculitis UK

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need some answers :)

Llinos profile image
4 Replies

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

Regards

Llinos

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Llinos
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4 Replies
jaffa12 profile image
jaffa12

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.

Kenneth profile image
Kenneth in reply to jaffa12

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

DevonLottie profile image
DevonLottie

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.

BronteM profile image
BronteM

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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