Hello, I have my first Rituxumab infusion in two weeks, will it be ok to go to a family wedding the next week - its 600 miles from home?

I have never posted before but was diagnosed with lupus just a year ago and MCGN secondary to SLE. My kidneys are working at around 19% down from 28% when first diagnosed. It is rather aggressive and I have been struggling to come to terms with this dramatic change in my life. We had so much planned but I'm sure most of you have been in this situation. After a year and a half on varying doses of Prednisilone and Cellcept (along with a plethora of other 'big guns' for managing BP etc) I have avoided dialysis and am just about to embark on Rituxumab infusions. Has anyone got any advice on how to prepare for this,is there anything I should be doing and not doing afterwards and will it be ok to be so far away from home/hospital within a week of the first treatment? Any and all hints, tips and advice would be greatly appreciated.

Thank you.

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  • Hi can't help in answering but would be interested in responses to your question. I start the same treatment on 1st July, was offered 3rd June but this meant I had second treatment two days before my holiday so I went with the next month in case I wasn't well after, they said it can happen everyone is different. So I start just after I get back from being away. I'm on Azathioprine, steriods and hydrochroquine the idea is that Rituximab puts me into remission (as current medication not working quick enough to get me into a period of remission/in control and consultant thinks this Maybe quickest way overall to do this so I can try for a baby as I so desperately want to do). I think everyone's reaction to Rituximab can be different I know someone who said they just felt a bit tired the next day. I guess all you can do is rest before and as much as you can after. All the best and let us know how you get on, and have a good time at the wedding.

  • My mum has started this treatment a few weeks ago and she was ok after. we all prepared for the worst think she was going to be really poorly but she said she felt quite energetic. It may be different for every one though

  • Thank you both for your replies. That is very encouraging wotshernameagain. I have no idea what to expect apart from what the leaflets/intrenet says. Butterflywings, good luck with trying for your baby, it's the best experience anyone can ever have. Hope all goes well for you and your mum wotshernameagain.

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