I know nothing, but stopping by to say very good luck!

Hi Sally,
Yes I had my first round of Rituximab infusion in February, everything went fine, as to tips it sometimes takes a bit longer than you expect, I had to wait for a couple of hours while my dose was ordered up from pharmacy, apparently they wanted to be sure I turned up before they mixed it as they didn't want it wasted.
Take your own lunch, and any drinks you want, although they offer tea and coffee, otherwise they offer you a hospital sandwich!
Its becomes quite boring and I found that I couldn't concentrate on the book I was reading as I kept dosing off, so a magazine that you can dip into might be better.
I would hate to say that hospitals aren't clean but I also took some antiseptic wipes with me - just me being paranoid.
Also I got very cold just sitting all day and I think my temperature droppped a bit so take a cardigan or something you can put round your shoulders that won't interfere with the needle.
If possible and if there's a vein available it was better when they put it into the back of my left hand rather than the second time when they put it in the bend of the elbow as it gave me more chance to move about. They've probably told you that you can move about and take the drip with you to the loo but its difficult to wipe your bum with the hand or arm the needle is in if you know what I mean.
An Ipod is useful if you want something to listen to.
Other than that just sit back and enjoy the rest for the day.
My infusion went fine, no problems, I just felt woosy that evening and found that I couldn't do simple things like use a computer keyboard, the letters came out all wrong, so it might be best not the plan on cooking when you get home.
So just to say good luck and I hope it goes well and brings you some relief.
With best wishes
Sheila

Hi Sally

Sorry I have no experience of this one but hope it works well for you.

Hi Sally. yes there was rather too much information regarding certain items, only one other thing I forgot to mention, is that I wasn't quite with it enough to drive myself home afterwards, so if you've got someone who can give you a lift back I'd definitely recommend it.
As I said really hope it goes well, let us know how the experience goes.
Best wishes
Sheila

Thanks again to you all - rheumy nurse fairly insistent that I have someone to drive me in case woozy from the Piriton, so hubby on call. Will do him good to do both school runs, esp as now we've got two school's to go to as our eldest is just starting sixth form!
At least I'm booked in for Fridays so will warn them I'll be completely unable to do anything at all over the weekend, & make the most of the rest.

Hi Sally i had my first go of Rituximab last November had a flare for a couple of weeks till it kicked in but was great for a few months , had my second go in July had no flare after and am doing well on it , i am not on methotrexate as i tried it years ago and can not tolerate it so i was put back on sulfasalazine last month to help the Rituximab. i have noticed a few things that i am going to mention when i see the consultant in September but dont know if its the Rituximab causing it or one of the other illnesses i have lupus and fibromyalgia, really hope its your wonder drug , good luck and let us know how you get on.

Sophie x

Hi all - esp thanks to Sheila & Jenny B!
You could say I had an eventful day last Friday - have been waiting for the post-steroid buzz that seems to get me to settle down, then wondering what to put. It didn't start brilliantly when all my (in the past very easy to put canulas in) veins decided to hide - but third time lucky. Everything went smoothly from then on & the nurses were really friendly & reassuring - 'Just watch out for tingling in your lips or mouth, that's where any reaction will start...'

Anyway, all was fine until just after they turned the speed up to 150 when I felt a bit itchy on my chest. like an insect bite, & looked down to see what looked just like an insect bite. By the time I'd thought about this & the fact that I didn't remember hearing or seeing anything that might have bitten me there were rather a lot more & I was very hot & itchy! I was duly moved from my confy chair to a bed with the drip stopped, & actually started to feel better straight away, as soon as it was turned off.
Apart from feeling very hot & itchy I was fine, but I think the nurses blood pressure went up a bit along with mine! My poor rheumy nurse was summoned at speed from the other end of the hospital (where she had just unusually enjoyed a large lunch as part of a Rheumatology Team Training Day) & was understandably not feeling her best either when she got across.

Anyway, the good news is that I then had IV hydrocortisone & piriton (on top of the piriton & paracetamol tablets that I'd had before starting & the IV methylprednisolone infusion before they put up the rituximab, & began to feel completely fine fairly quickly (though a brief trip to the loo showed a really scarily blotchy face - & this was when I felt better).
It was only about then that I realised none of the Rheumatology patients having rituximab at our hospital had ever had any reaction of any kind, so it was new to them as well as me. To be honest it felt rather embarrassing being the awkward one, especially on a Friday afternoon!

My Consultant then spoke to the Haematology Consultant, who has been using rituximab in the same doses for much longer, & she assured him that it would be fine to restart the drip, as long as they took it relatively slowly. As I hadn't had any wheezing or breathing difficulties, & by then felt fine, I was quite happy to do this, rather than waste the treatment (I'd only had a quarter of the dose by then), though I don't think all the nurses felt quite as happy as he was..... At last my medical training did come in handy, as I was able to have a proper discussion with my Consultant as to the probable mechanism of my reaction - some sort of cytokine-mediated reaction, rather than an allergy as such - which sort of reassured me about restarting. The best reassurance though was the Haematology Consultant saying that they have always managed to successfully restart after a reaction like mine has settled, & that next dose I'm less likely to react. And my Consultant did make sure he'd checked with me that I myself was happy to restart, without putting any pressure on me at all to do so.

Restarting it was absolutely fine - no reaction at all, although I did have rather more attention whilst having it than earlier in the day (& they wouldn't let my Rheumy nurse leave for some time....) I'd finally had 90% of the planned dose by 6pm so they decided to leave it at that.

Next time they have decided I'll have the same medicaton before as planned (paracetamol & piriton tablets plus IV methylprednisolone infusion) , plus they'll give me the IV hydrocortisone & IV piriton (chlorpehniramine) before I have any rituximab. Plus I've promised to wear a relatively low cut top again so they & i can easily see if I come out in blotches again!
The best bit is the extra IV steroid gave my arthritis a really good slap, so my hands in particular have been much better the last few days! I do however find I feel a bit weird after IM methylprednisolone, and felt particularly odd & a bit 'spacy' over the weekend with several wierd dreams - is that just me or do the rest of you feel like that after injected steroids?

Anyway, I'm looking forward to a more uneventful time next Friday & will let you all know - it's good to know so many others out there are thinking of you when you go to hospital for sometning new. And if any of you are worrying about having a reaction to rituximab - if I'd known what was going to happen it wouldn't have made any difference to my decision to try rituximab. I never at any time felt as if anything dangerous was happening to me or that the staff weren't in control, & all the systems for dealing with my reaction kicked very smoothly into operation. So please don't any of the rest of you who haven't yet tried it worry!

Love to you all
Sally

Thank you Sally for writing such a comprehensive story, it was really informative. I hope you are feeling ok now and that the next one is less eventful.