HI

kmr

Hi To everyone hope you have all had a great xmas and i wish you all a fab new year, Would any one have any advise on what to expect at the hospital for my daughters first infusion(rixtimad or something never know how to spell half the things to do with RA lol.
thanks

kmr

Rituximab

skezier

Hi Karen,

Nice to see you again.

I haven't had that but a few here have an some have found it works really well and really quickly so with luck it will really help your daughter.

I do know that all infusions can take it out of you for a couple of days after though so don't be surprised if she gets tired after it.

Fingers crossed it will work well for her and let us know how she gets on please. Happy new year to you both and again nice to see you. Cris xx

kmr

Thank you ime keeping everything crossed that it works as nothing else has
karen

dreamdaisy

Hi KMR, it's nice to hear from you again. From what I understand about rituximab it is infused (slowly) and then followed up with a steroid infusion (or the steroid's done first then the other!) and that is itfor six months. After that period of time another infusion is given if all is well with the patient (ie no infecitons or bugs etc). It works in a different way to the other anti TNFs / biologics hence the time span between treatments. I hope your girl gains some improvement from it, I really do. I wish her (and you) well. DD

suzygirl

Just wanted to wish you and your daughter all the best for the infusion.

tillytop

Hello KMR

I am on Rituximab and this is my experience of how the infusions work so far (I have only had my first lot).

Each "dose" of Rituximab consists of two infusions, two weeks apart. At my hospital they routinely give a second "dose" of two infusions after six months before they make a decision about whether it is working. After that, infusions are as and when needed. I spoke to a lady at the hospital the other week who was happily going a year between infusions because it was helping her so much.

I was told at the beginning that Rituximab is very slow to take effect - I have heard of someone who waited almost a year for it to start working. For me, I felt that it was definitely beginning to help me by the time of my first six month review.

In terms of the process itself this is what happened for me:

I had blood tests two weeks beforehand to check B cell levels (these are the cells which the Rituximab targets) and to check for various other things to make sure it was ok to go ahead.

The infusion really is an all day appointment - I was at the hospital for about 9 hours both times.

First they gave me paracetamol, an antihistamine injection and a steriod infusion to minimise the risk of an allergic reaction. This was followed by the Rituximab infusion. They infused it very slowly, checking temp, BP, oxygen levels every half an hour and speeding up the infusion if these were normal and if I was feeling ok. Then it was just a case of waiting for the infusion to be finished. They then finished off with an infusion of saline solution to flush through the drip line. The same process was repeated two weeks later. I was absolutely fine, but they were worried about my bp so they ran my infusion more slowly than usual but even at full speed it takes a long time.

I was warned that I would feel rough afterwards due to, as the consultant put it so beautifully "b cells dying all over the place". But actually, apart from being pretty steamrollered for a couple of days, I was fine.

Final thing I can think of to say is that, although the Rituximab is slow to get going, the steroid infusion which goes alongside each time, really helped me and lasted a good while.

If you have any other questions, please do ask and I will do my best to help.

Hope all goes well for your daughter and that the Rituximab helps her.

Tillyxxx

kmr

thanks tilly thats a great help. i just hope it works , i am going with her on the day, she has blood tests ect this week and i think she has some on the morning of the infusion as well.
regards karen