First Rituximab..

[elrose]

Well I finally had my first Rituximab infusion today after the debacle of the first attempt. No problems, feeling okay - bit stiff and tired for being sat over 6hrs but aside from that medically speaking all good.

That said there were some issues, I had taken a friend with me (and fair enough hadn't checked if I could) but the 'nurse' gave me short shrift and she had to leave, I had taken a blood bag and xray request that my Rheumy had sent me through the post with instructions to take along and the 'nurse' went into surly whinge mode about 'always being asked to do these things...etc' and proceeded to tell me that in no uncertain terms was she going to do the bloods or arrange anything else...Now she may have had a point but surely that is an issue for her with the powers that be and not the patient.

Given that it was my first infusion of any kind I expected that she would give me a pep talk about things to watch out for and let her know if I was experiencing any issues..nada. I watched her do obs on the other people there for infusion and she took temps with them and then didn't bother with me, given that I have an issue with my immune system and am prone to infection it might have been wise to check me (that and the ordered bloods could have painted a different picture) but it seemed clear that due to my age (39) she had obviously made assumptions about my ability to handle the procedure (my fellow pations were all at least mid-60s).

Mebbe I caught her on a bad day but was not left with the best impression of the infusion service at my hospital...am hoping next time is better.

[mumoftwokids]

hi Elrose, sorry to hear about your experience. i to am on retuximab, when i had my infusions, i had obs every hour, lunch and cups of tea given all day. on my first infusion (boy what a LONG day !!) i had a reaction in the first hour, which left me with a cracking "trout pout" and looking like Jordon xx but apart from that i got on fine xx i had my infusions every 6 months, but sadly it didnt work for me, so im going on a new infusion in december. i hope you get a nicer nurse next time you go, dee x

[elrose in reply to mumoftwokids]

Me too but it appears this nurse is the one who covers all of the Rituximab Infusions, mebbe explains her somewhat blase attitude and apparent absence of compassion. I too hope it works for me and will happily endure her surlyness if I feel better, its only once (albeit 2 sessions) every 6th months...what are they putting you on in December and did it just have no effect or did you have bad effects with it? Linda x

[mumoftwokids]

hi linda, im going on Tocilizumab in december, i cant start it before then, because i have to wait for the retuximab to be out of my body. the first retuximab cycle went ok apart from the trout pout xx it took some of the inflamation down and eased the R/A off, but it didnt last for me (about 6 - 8 weeks i think) so lets hope the other one works in december x i will say that the day after the retuximab infusion i felt sooo good, but now i think it was steroid i was given before the infusion started. do they give you the saline flush, then the steroid then the retuximab ??

[elrose in reply to mumoftwokids]

Yeah they did that, no matter anyways, take 15mg Prednisolone daily already. So the steroid shouldnt have any particular affect. Hopefully this means if I feel great tomorrow its all the happy work of rituximab lolx Good luck with that other stuff, why is it they have to give them such impossible names??

[cathie]

Please let us know how you are. I may be transferred to this infusion. 6 hrs is very long, but it's not very frequent is it?

[mille]

Hi elrsoe,

Sorry to hear that the nurse wasn't as helpful as she could be, it can make all the difference if they have a nice manner about them but the main things is that you got the treatment and it all went well. Rituximab can take a while to work, in my case around 4 months, some people show a much quicker response and i actually though it wasn't working but i have started at last to feel a good bit better. Everyone is different, some people can wait about a year before they need the second course of it (each course being 2 infusions) and others every 6 months. I was really bad before i got the infusions and i wonder if this could be why it took so long to become effective.

Good luck. x

[HarleySue]

Hi elrose, l too am on Rituximab and before that had tried lots including anti tnf Cimzia which only worked for a few months. The first cycle of Rituximab gave me only a very slight improvement and I had to have another depo kenlog injection just to keep going. However after 6 months I was given the second cycle of Rituximab and I can really feel the benefit still now 5 months after the infusion. It is extremely important that they monitor your blood pressure & temperature every hour during the infusion as this is the only way they get the info on whether they need to slow the infusion down. I think I would mention it to your rheumy nurse just for your own peace of mind when you have your second infusion. Best of luck with it and I hope you do see an improvement soon but don't give up until you have had your second cycle in 6 months!

Love Suex

[elrose]

Thanks to all who have commented, especially those that are 'old hat' so to speak at to Rituximab. Cathie will absolutely post how it does (or doesnt) work for me.

Mille am prepared that its unlikely to be an overnight success though would like it to be slightly better than 4mths (wouldnt we all lol) and Harleysue my nurse had a printed schedule for the infusion and whilst she took my blood pressure twice (certainly not every hour) she never took my temp and didnt veer from the schedule once, I got the sense that this would have messed with her daily routine. I wouldnt give up on a potentially beneficial treatment just because of a nurses attitude but its sad that she is this jaded and judgemental about the treatment she is dispensing. I have a secondary autoimmune disease which leaves me with little immunity wise so a treatment that impedes that further is supposed to be closely monitored, I feel that because of my age she simply assumed that I was better placed to deal with any ill effects.

Hope all of you are doing okay or if not okay is just around the corner....Linda x