First infusion of rituximab: It took from 9.30 to 4.0... - NRAS


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First infusion of rituximab

cathie profile image

It took from 9.30 to 4.00 as scheduled. Had an injection of piriton, then some steroid then some saline. Then they put this large bag of the rituximab magic potion on the drip. By then I was feeling a bit woozy because of the piriton but felt more alert after various trips to the loo - still all hooked up. I was lucky enough to have one of those self-raising chairs so you can keep your feet up and it also stands you up which is helpful because with all that fluid going in I had to pee quite a lot.

I have to come back in two weeks time. After that we shall see. My rheumy is supposed to be making decisions about the future treatment, and I have another appointment with him in early May. Around then I should have seen the knee surgeon. I was told not to arrange anything approaching surgery for a month after my next infusion and I think you have to do similar dodging things with the flu vaccine (because the ritiximab kills off the cells that the vaccine attaches itself to or something).

Anyway that's what I think I learned today. The staff were lovely and I ended up (still a bit high on piriton and having seen the Singing Detective recently - imagining them all singing this:

36 Replies

Hi cathie, Following your post with great interest knowing I'm going down the same road, How long did you wait between seeing the Rheummy and your first Infusion. matt

Loving the link Cathie, think it brought back a childhood memory! Crossing fingers for you x

I really hope it works for you Cathie. X

Well done Cathie! Now you know how it goes infusion two will fly by and then just wait till it works its wonders ;-) and yes those automatic chairs are super which let you get up and down easy aren't they! I had my feet right up. No wonder I was in the land of nod. Piriton sent me to sleep .. really asleep .. they had to wake me for the B/P most times ;-) ( I am pretty much the same gaga sleepy state tonight after a 45 min session for the first part of a root canal and two mega doses of anaesthetic for the jangling inflamed nerve which has been driving me mad. Now all seems calm and finish off the actual filling in two weeks.) Once again so glad it went well for you. xx

Dear NeonkittyUK, Just thought to link you to this as I am having my root canal tooth removed asap. I have been reading up on root canals. Please read this before you complete the filling, had I known this before I would never have had one. God bless.

cathie profile image
cathie in reply to abeliever

I dont know about this. Had root canals done in UK many years ago and no problem. Your literature refers to the US.

abeliever profile image
abeliever in reply to cathie

Well from all I have read including UK info I reckon they encourage bad toxins underneath that you can not see or feel having had the pain receptors cut. here is another report from this site a year ago -

abeliever profile image
abeliever in reply to abeliever

cathie profile image
cathie in reply to abeliever

Why don't you start your own thread rather than hijack this one? It's not very polite to do this

abeliever profile image
abeliever in reply to cathie

Sorry not intentional, just wanting to pass on info that may help improvement of health. I have similar info on flu vaccines. Will take your advice. God bless.

cathie profile image
cathie in reply to abeliever

I do not need your faith based advice thankyou. Playing with people's health and trying to frighten them is dangerous and I will report you to the forum administrators if I see any more of this.

nomoreheels profile image
nomoreheels in reply to cathie

I agree Cathy, you're not alone in preferring not to be bothered with such ideas & I shall do the same if any more is suggested to me, it's becoming a nuisance.

abeliever profile image
abeliever in reply to cathie

Sorry, that's not very nice, it has nothing whatsoever to do with faith. Great I happen to mention something to help others and you want to report me! I thought people came here for advice of others.

Equally it's not very nice being told our traditional choices are wrong & continually profer alternatives, they're not needed & not wanted by the majority of members here. Indeed people do come on here for the advice of others but you don't do that, you tell them to take this & take that & that's potentially dangerous. How do you know that what you're telling them to take won't react adversely to their meds? You tell people to read things that claim how the medical profession are poisoning us. Vulnerable & poorly people do not need to hear this, they require help & support not these alternatives each time. Not everyone has your views & it doesn't come across as help, rather telling us our choices are wrong & yours are right, trying to convert us to your drug free way. If you believe in them that's fine, I hope you continue to do well on them, but I really hope you never require emergency treatment.

Hi guys, I believe it is my fault for mentioning in a post to Cathie that I was sleepy too, but mine due to the anaesthetic from root canal prep. I will speak to my dentist about all of this ... maybe he can suggest alternatives but as I have two other root canals ....... and most people I know my age mid 50's and younger in 40's have them, to be honest. I do not feel too great about it all anyhow so not a happy bunny tonight and a sore face too. :-( So my sincere apologies for mentioning my tooth. xx

No more here on roots and teeth .. but see my latest post on Root Myths.

Not your fault Julie, the catalyst maybe but it's been bubbling under recently & why I seconded Cathy's reply. It's just that I object to extremist views being promoted, away from traditional meds.

I hope your problems are sorted without too much more pain, you do not need that on top of everything else do you? x

Thank you NMH .. I found an article which is the opposite view and posted separately. xx

:) x

I can't reply to your post directly not being a member on that site but it certainly does prove the point. x ;)

It is not your fault, seemingly it is mine for caring enough to share what I have learned. Having had RA for 22 yrs, been on MTX for 12 yrs, Had 3 joint replacements, umpteen X-rays, MRI's, CT Scans, 2 Kidney stone ops, 1 an emegency, scans down my throat. Last August spent almost 4 weeks in hospital for a Femur repair from which I am still recovering stuck 24/7 in bed/wheelchair. I probably have nothing to offer anyone here. So bye then.

Now here is how it is, you prefer alternative or natural treatment & I prefer tried & tested medication that controls me. I don't doubt you care honestly I don't but I strongly object to you continuing to push & instructing us to use natural treatments when you're informed they're unwanted & that our choice is scientific. Neither do I doubt you are in need of proper treatment but you must admit you do appear to be selective. You're prepared to take traditional meds for some problems but not for those which matter. What about strong pain relief after your joint replacements, surely you didn't refuse those? Many Rheumatologists aren't happy with using natural methods alongside our medication because some interfere with them, this always must be considered & you're telling us to ditch the ones that work for us.

I don't wish for you to sever connection with people with the same problems as you but it is your choice. We all rub along well but you are alienating yourself by continuing to tell us, theorizing that we are all poisoning ourselves & that your preferred option is the only way. Conversely you have a lot to offer, by keeping us updated with how you're responding to natural products, we are always willing to learn but not to be told we're wrong in our choices, that's all.

NeonkittyUK profile image
NeonkittyUK in reply to cathie

Yes I have one done from about ten years ago. I will ask my dentist and print off the info for when I see him next year. so what is one supposed to for then? Have an extraction and then an implant? Mine is in a place which isn't obvious. Bottom lower mid back.

He has put the antibiotic in and doing the proper filling next week. Thanks for the info though. I could ask him to pull it but I already have a root canal so that's done.

Hi, will you have this tooth extracted? What is the alternative? Are you in the USA btw?

I will have it out, I need all my strength as I am sat in a wheelchair and can only do a few paces with my zimmer. I am in UK. Hope you feel better soon.

So glad it went well. Thanks for sharing. I am due mine on Thursday. Will let you know how it goes.

Hahah glad you shared your experience, even if you are very happy still, just in case I get the same drug. Mind you they may do it differently over here.

Thanks everyone. I was peeing so much yesterday, partly that's the impact of the steroid. Anyway I'm happy to say that I slept right through - no sleeping pills or anything, to 7am! I'm thinking about the next few weeks to plan now for the first time for more than a year. Don't know how it'll pan out but I'm feeling as though they're looking after me.

IainM profile image
IainM in reply to cathie

Hope it all goes freat for you Cathie, you deserve it :) x

Caza profile image
Caza in reply to cathie

That all sounds very positive, fingers crossed for you x

Brilliant news Cathie, my fingers and toes are crossed for you. The piritin makes me feel lousy. Now all we need is to get Matt and Someonesmother sorted!!!! Hope it's not too much longer for you two.

KiKi x

Thanks for that report, Cathie. I believe it might be the next stage for me. I do hope it works for you. J

Hi Cathie, wonderful news! I'm not sure what pritin is but it sounds like it's part of the infusion experience.

Wishing you all the the luck for great results!

Its an antihistamine I think - they're concerned about people having adverse reactions. It made me dozy. But sleeping right through til 7 was a real bonus. I'm trying to work out what do do next - I need to start claiming my life back - on the assumption/hope that this is going to work.

I also think psychologically I feel safer in the hands of this new rheumy and the day unit staff who were the foundation of my relative well being before that disastrous rheumy came in.

I think feeling safe with your care team is so important! Sleeping right through sounds delicious all on its own, too. Best of best luck for you.

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