Upto date Rituximab infusion experience : Well hello... - NRAS

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Upto date Rituximab infusion experience

Tessthomy profile image

Well hello folks. As a few know I had my first Rituximab infusion.. it was due Tuesday but I got there and they tell me I need to have recent blood work done .. so had to postpone to today. (Groan). Let that be a warning .. make sure you get everything up to date before!

So I’m 5 hours in. All ok .. so far. They’ve checked my bp and temp every 15 mins to begin now every 30. Have speeded the drip up. I’ve felt a little spaced out but nothing untoward .. temp went up as did bp but both back down to normal now 2/3 hours left. If this is the height of it .. I feel I’m doing well. Touch wood continues ok .. for those who are worried .. I think the worse this is being inside on such a lovely day (I’m a real outdoor girl) and the boredom. Also an old lady with a pee bag opposite who isn’t that friendly.. ah well! Had some snacks to keep me going and a few phone calls and chats to friends and family. Will let you know when it’s over re side effects if any (🤞) TTFN. TT x

20 Replies

Hope it helps and you feel better xxx

Glad alls well so far , its the hydrocortisone thatcan make you feel spacey I think. Good luck now for the next one in two weeks 😀

bpeal1 profile image
bpeal1 in reply to weathervane

And the anti-histamine! :)

weathervane profile image
weathervane in reply to bpeal1

Oooops thats what I meant 😉

Glad to hear that so far so good, but sorry to hear that you had a delay due to bloods. I had some bloods taken last Thursday so hope that all will be well when I turn up next Tuesday for my first infusion. I've had a rotten sore throat, cough and now finally a cold so I'm hoping that I'll be clear of this before next week as I don't want any delays! Looks like I'll need to take a good book with me to keep me from boredom, hoping they'll provide drinks and snacks but I suppose I could pop some tasty morsels into my bag.

Hope everything continues well for you, keep us updated x

AgedCrone profile image
AgedCrone in reply to Jtskis

Do check with your rheumy nurse ....they won't give you the infusion if you have any sort of infection. At my hospital you need to have a blood test 5-7 days before infusion.....so you should ask the timescale at your unit.

Definitely take plenty to keep you occupied........they do provide a packed lunch, give you a jug of squash & come around with hot drinks...but the time does drag. I listen to the radio on my tablet as I find I can't concentrate on my Kindle as you are constantly being checked for BP etc.

I find the anti histamine makes me drowsy......& as it's usually quite cold in the unit I take a warm throw & I drop off to sleep most of the time.

Good Luck .....Rtx has been a lifesaver for me....after a 20 year merry go round of different drugs it's such a relief to be able to make plans & lead an almost normal life.

How many rounds did it take for you to feel better? I finished my first round last week and not another one for 6 months. Waiting “patiently” to see improvement (my husband is also, a little less patiently).

I think a couple of months..it was a couple of years ago so I can't recall exactly.

But like all RA pills & potions what took me two months could take you one month or three. Don't fret about the timescale...Just get on with your daily routine & don't keep looking for signs....tell yourself

It will work!

I now know how well it was working for me as I had to delay my last infusion because of a rash they "thought" might be RTX related & now all the aches & pains that I thought were gone for good are returning...but I am having my infusion on 18 June, so not long to wait..I sure hope it kicks in quickly!

weathervane profile image
weathervane in reply to Jtskis

Gargle with salt and steam with some drops of teatree oil . It has helped me get over a cold 😀

Tessthomy profile image
Tessthomy in reply to Jtskis

Yes I took my iPad with Netflix which I was glad of but there’s so many interruptions with BP and temperatures being taken so easier to watch than if you’re trying to read a book! I’d keep losing my place.

They do come round with drinks. (But not much!!). So I sent my hubby down for a costa latte when he popped in.

Keep well hydrated and a window open if you can as it gets stuffy on a warm day. Lots of snacks to keep you going .. I also took hand wipes to keep me fresh. TTx

Hi again. So I went home and eventually got out by 6! So a full 9 hours. They explained the first one is always long as they like to do it slowly. A long haul of a day but it did go surprisingly quickly. I felt a little tired but mainly relieved that it was all over. I went for a short walk in the sunny countryside with my dog when I got home .. so can’t be bad!

I feel lucky that I’ve had more or less zero short term side effects... fingers crossed that the Rituximab works (the steroid made me feel hungry and pretty good temporarily!) .. the only slight drawback was that I did feel my heart pounding last night, again down to the steroid so not a lot of sleep was had but luckily not too tired this morning.

Roll on part 2 in a couple of weeks. Good luck to those considering or with it looming up. They’re scary fierce drugs but they really do look after you in the hospital. All I can say is thank God for the NHS and these miracle drugs 🤞🤞 TTFN TTx

Make sure you get another blood test before your second infusion of RTX.

At my hospital they have started giving you the dates for your next pair of infusions in 6 months (or whatever gap you have between infusions), & unless you see your rheumy nurse just before those infusions (need a blood test before that too) you are expected to organise your own blood tests.....so do check with your specialist nurse what you are expected to do. It's all a bit DIY, but it does work as long as you are told what's expected of you.

Don't expect any side effects from RTX.....I have been on it since 2016 & it has been a lifesaver........only had a hiccup when I asked for for the drip to be speeded up! So it was my own fault.

Hope it works as well for you.

Tessthomy profile image
Tessthomy in reply to AgedCrone

Good advice thank you! I will indeed find out if I need another blood test done. I guess it makes sense but they haven’t told me. I agree I think that your health really is down to you at the end of the day, and DIY is a good description.. I think if I was paid to look after my health I’d be a millionaire by now! Good to know about non side effects and how it’s been your life saver. Long may it last ! I’d rather spend longer in the day in hospital than speed it up to get out quicker. What happened when they sped it up?

AgedCrone profile image
AgedCrone in reply to Tessthomy

Nothing too dramatic...I just felt very light headed & my BP dropped. The infusion was stopped for 30 minutes & as I was then back to normal it continued ..but slower.

About a week after I got a chest infection & had to take anti. Biotics. I had never had a chest infection before,& I can't remember the last time I had antibiotics.

My rheumatologist said by speeding up the infusion the cells had probably been eliminated too fast.......so now I stick with 6/7 hrs & all is well. Of course it could just have been an infection I could have caught anywhere.

I have my next infusion in 10 days......& I can't wait.

I developed a post viral rash after having Flu, but only found out what it was after a biopsy....& by then my infusion had been delayed in case it was caused by the RTX (it wasn't) & right now my old symptom are slowly creeping back so I'll be on the unit doorstep bright & early to get my " fix"!

Tessthomy profile image
Tessthomy in reply to AgedCrone

Sounds good. .. it really is a bit like a fix isn’t it?! I will take heed of all this and tell them it can go as slow as it wants. 😅.

They told me when I started etanacept that I would be prone to infection. I’ve got used to keeping clear and washing hands etc etc but sometimes things can’t be avoided. I have been fairly lucky with virus’ and infections with one bad bout of pneumonia which made up for the lack of concurrent infection.. since then pretty much nothing ...I’ve heard if you put Vaseline around your nostrils when there are coughs and cold around .. this can stop germ particles going into your nose .. sounds like sense ! Think I’ll give it a go 🤣🙄😂🤞TTx

I always use the Vaseline trick when I fly anywhere......does seem to work.....I Don't get a cold or a sore throat after flying theses days.

The old wive's tales are sometimes the brst.

Hi, I have just come off Benapali bacause my liver markers went through the roof i can only put it down to that as i have been on MTX for 4 yrs now with very little problems so at the moment i'm on nothing at all apart from a strong kenelog (steroid) injection which thankfully is working fine for now, I am waiting for an appointment to start Rituximab and am on fortnightly blood monitoring so should be up to date whenever i start this process hope this is a success as Rhuematoligist said if this doesn't work i will have to come off biologics all together and revert back to MTX.

Glad to hear everything is going ok with the infusion so far

Tessthomy profile image
Tessthomy in reply to phil_54

Fingers crossed for you 🤞😊🤞

Well done you.... if it works for you as it did for me.... you will get your life back.

Hi, sorry you were unable to have the Rtx infusion. The rheumy nurse should have made this clear about blood tests beforehand. Mine did when I started my infusions. They sent me blood forms and the B cell tests go to a larger hospital with mine so I have to ensure they are 3 weeks to a month before the first infusion of the duo if that makes sense. Now it is up to me as I know the procedure well after four years. We are now also supposed to have blood tests a couple of days before the second infusion too and not on the day we arrive for it. They need to check your inflammation levels before and after of course like any other med to see if the med is working.

Good luck and hope Rtx works as well for you as it has for me. The only real side effect for me during infusion is the anti histamine and once a water infection but that was because I was being harassed by another patient as every time I moved and she made comments on me getting up so I didn't go to the loo enough. Lesson learned, as like any immuno- suppressant infusion it will lower your resistance and make you prone to water infections and colds etc. Be sure to drink plenty and visit the loo often. They will help you move your drip trolley/stand etc. Good idea as AC said to take a throw to snuggle under. Even if summer, hospitals can be cold if you haven't got the sun coming in and the CH is off.

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