Rituximab infusion: Hi All. I have RA which was being... - NRAS

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Rituximab infusion

Jarden_20
Jarden_20

Hi All. I have RA which was being kept under control with biologics, but last year I was diagnosed with Scleritis, a very painful inflammatory eye condition. I have been on steroids and humira, but unfortunately they have not worked to control it. My rheumatologist and ophthalmologist between them have organised Rituximab infusion which I am having TOMORROW! I must confess that I am feeling quite anxious about having this infusion, so anyone out there who has had this treatment who can offer some advice, it would be very much appreciated. Thank you. Love and good health to you all. X

(The photo, btw, is the rituximab monoclonal antibody)

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Love the image, makes you feel much more positive about it seeing such a cheerful looking molecule!

I don't take it myself, but if you use search box top right you can find posts a bit it. Also should be a heading "related posts" on the right of your screen with relevant things. All I can say is that several people on here have had great results with it, and seem to advise people to make sure the infusion is done as slowly as possible.

Hi Jalaw..just don't worry about it. From what I read it's one of the least intrusive Biologics.

I've been on RTX since 2016...I drive myself there & back,& apart from having a bit of a rash during the first infusion - which calmed down when the drip was stopped for awhile.....it has been a life saver for me.

Do take plenty to read as your first infusion could last up to 7 hrs...it gets shorter as you get used to it.

Also take a cardigan or a throw as you tend to feel chilly. You are given anti histamine ....that makes you sleepy so you doze a lot & the day does pass quite quickly you.

Good luck...hope it suits you.

hang in there - i was the same this time last week. hugs. people on here said take books, kindle, snacks n pashmina as may feel cold. 1st infusion took all day, in at 8.15 collected at 5.45. they were all v nice, offered soup n sarnies etc. bp ery 45 mins, approx. v tired after, feltdrunk all week but that's minor, really -and today feeling better, nxt on 8th august and then reviews just ... for ? 6-12 months!! so despite my fears it's worth trying. search my name and you'll see what i said. big hugs xx

Hi hope you get on OK having rituximab infusion. I used to have it every 6 months. Because of the piriton antihistamine I wasn't able to drive until the following day so used to get a lift home. The day could be quite boring but take lots of things to keep you occupied for when you're not asleep. Nurses used to give me a blanket when I was cold each time during the infusion. I found the infusion made me feel so much better after about a month but unfortunately for me I kept getting very neutropenic and therefore had to be admitted to hospital after a few months of having the rituximab. Therefore I'm unable to have it anymore.

Now i have bilimimab infusion every 4 weeks instead .I'm only in hospital for about 3hrs 30 mins .

hope it all goes OK for you

X

I’ve been having it for several years now. So far, no side effects, the only problem has been the steroid I’m given with it which raises my blood sugars. Hope it went well.

Hi, I've been having rituximab for a long time now, I think i've had about 10 or more infusions and it has really helped me. I am a lot more mobile than I was before getting it although with me it took quite a while to work, it was around 4 months before I got the full benefit from it. After the first infusion I remember my eye felt as though it was burning but I haven't any any more side effects from it. I did feel very tired after the first infusion but am fine now with it and they will keep an eye on you so don't worry. x

Thank you all for your kind response and advice. I had the infusion yesterday (Monday) and survived! Feeling quite tired today, but apart from that, touch wood, I've had no other side effects. They did put it through very slowly though as it was 1st one. Lets hope this zaps the RA and the Scleritis once and for all 👊💥, .....I NEED MY LIFE BACK! 😁

I've changed my diet, cutting out gluten, carbs, sugar and lectins, which has definitely helped with my feeling of wellbeing and joints. Fingers crossed that the rituximab with clear up the Scleritis, then i can keep the RA under control with my diet 🤞 Love and good health to you all x

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