Rituximab: Hi anyone on or had a rituximab infusion, I... - NRAS

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Rituximab

madambutterfly profile image

Hi anyone on or had a rituximab infusion, I may be having one shortly and would like any info that you may have, thank you.

26 Replies

Yes I'm on it. It's a full day do I take a DVD player and some drinks .

They give you paracetamol and piriton tablets prior to the infusion as the main problem seems to be having a reaction . However the staff are with you all the time and check your observations very regularly. They advised me if I felt itchy or unwell to tell them straight away. I didn't feel unwell at all!

Then they put up a steroid infusion which takes I think about 45 mins again to help you manage the infusion but it has the added benefit of making your joints feel better!

Then the rituximab goes up very slowly. My first doses took from 8 am till 4 pm . i was. Dry comfortable and the rest was lovely!! You can walk around pushing the drip stand .

Then 2 weeks later you do it shown but then it's 6 months till your next cycle of two infusions.

I have found it really helps a lot but was nervous after the first two as it didn't feel as tho it did much but it really has!

Good luck , try not to be too anxious , the staff are there but I never needed any help! Xx

Allanah, I had been told it was a long day, do you think my husband will be allowed to stay with me as we don't live close to the hospital. I was feeling very anxious, you have helped me with my worries, It is good to hear that it has helped you. I have had so much pain in my joints I am beginning to think its the norm.

I am now looking forward, Thank you so much for your quick reply. I will contact you with the out come later.

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in reply to madambutterfly

Yes hubbie can come too and will veg me in handy to fetch you things. I've had 13 cycles of Rituximab and doing well on it. It did take a while to get going with me though.

I feel very tired afterwards my advice nothing in your diary for a few days and drink lots and lots of water during and after the drips. Good luck!

Ps at my unit to have to take my own food. Cup of tea at 10 and 12 only.

madambutterfly profile image
madambutterfly in reply to

Oh thank you so much, Sorry missed your post, and asked again. That will make it easier for us, as its not close enough for him to go home, I was retired from my job so will be able to rest up, thank you for all the handy tips. Hope this finds you well.

In my unit it's small so they ask them to come and go but I'm sure that if you explain you don't live near they will allow him to stay. some hospitals have overnight stay rooms that you can book . I know some of my friends do this sometimes . Just ask the Rheumy nurse beforehand what they can offer ! My unit also provides as much tea and coffee , biscuits and sandwiches!!spoiled !

Its so good to know, all hospitals have there own ideas, nice to see you get spoiled, Why not!

Let us know what they say and how you get on??

Will do. Take care.

Hello, I had my first Rituximab infusion in June, I was very nervous but it went ok apart from a slight reaction on the first one but like Allanah says you are monitored very closely and the staff were great and straight on it. I found it helpful to stay positive and to think that the infusion is to help me not hurt me!! I'm due to have another one very shortly and boy do I need it...it was very slow to work with me about 16 weeks but everyone is different, the steroid infusion you get first helps also. Good luck and I hope it works for you 😊

Best of luck to you also.

I've had two cycles of the infusion and all as has been described above. They dont like you to have it more frequently than every six months because of being immunocompromised. I would try to discuss what happens then. I was a bit in the dark to start off with and now I've found a way of contacting the rheumy who can start the ball rolling with blood tests as the 6 month period starts to come nearer. I have needed a steroid shot a bit before that - around 5 months and that doesnt seem to be a problem. I get it at the GPs but would make it clear that its a general steroid shot rather than one in the joint which they probably cant do.

Oh yes and they monitor you very closely while you're having it!

Thank you Cathie, The more we you know the better prepared we are, I now have to have all the relevant tests prior to the Infusion. Still unsure if hubby can stay with me, I am sure Rheumy nurse will let me know.

I had one cycle two years ago. My unit provided tea and lunch and a companion could stay. For me it was paracetamol and piriton at home before you went. You should get a letter before which gives your units procedures. Don't forget to take your usual meds with you and check whether you can take them as necessary (I was on regular painkillers at the time). Hope it works for you as it did nothing for me. Farm

kalel profile image
kalel in reply to farm123

farm123 I am just curious if the infusions did not work for you what are you taking in terms of meds now. I am just wondering because at one point my dr spoke to me about these infusions but for now I am seeing an integrated health rheumatologist. Thanks.

farm123 profile image
farm123 in reply to kalel

Kalel, currently on Abatacept injections and 200mg hydroxychloroquine. Farm

kalel profile image
kalel in reply to farm123

thanks for letting me know farm. :)

I am sorry you got no result Fram, I would love to think that everyone could be pain free if only for a short time.

Like each and every one of us, popping pills and having jabs, is not what we expected from life.

I hope you find something to make your life easier. .........

At the moment Abatacept (weekly injection) with 200mg hydroxychloroquine (daily) seem to be doing the trick. Not perfect but better than it had been.

kalel profile image
kalel in reply to madambutterfly

I agree with you but I have to say that if the drugs don't work then look at alternative therapies. Personally even though I have had a few slip ups so to speak finding a good functional health practitioner has worked woners for me. I do hope that your new meds work out for you.

madambutterfly profile image
madambutterfly in reply to kalel

Got to give it a go!

I've only had one cycle (a pair of infusions) so far. Ideally they should be two weeks apart, but I got a chest infection in between, so mine were nearly four weeks apart. For the first one, I was in a four-bedder ward. I spoke briefly to one woman who has RA and was on her 2nd cycle. They had to slow down her infusion because her blood pressure got too low. I was lucky, my BP, temp and pulse were all OK, though the pulse was a bit high towards the end. Before they infuse the Rituximab, they give you a steroid infusion and an antihistamine one. This is an anti-allergy precaution, but it made me very sleepy. So between the monitoring visits and changing of the infusion bags, I slept most of the time.

For the second infusion, I had a room on my own with an en suite. I had a couple of visitors. They gave me lunch and supper (yuk) and tea whenever I wanted it.

I was incredibly tired for about a week after the second infusion. Next time. I'll try and clear my diary.

good luck

Jora

madambutterfly profile image
madambutterfly in reply to Jora

Hi Jora, a sleep sounds good to me, but only if I am on my own, find it difficult to sleep in a room full.

The first infusion is long. Take a book. After the first infusion, my fTigue was gone for a long time. The second infusion is not as long but take a book. I like to do sudoku puzzles but if they infuse on the right wrist, you can't use a pencil. I always drink a lot of water the day before. Sometimes they have DVD's for you to watch. Some people just take a nap.

Thanks for advice, I wont have a problem re using pencil as I am left handed so may have a go at crossword.

The first time they used my left hand, as the veins are juicer there, but I am left handed ! So I asked them to do my right hand next time, and they did.

J

Well I just wont let them !!! Only kidding..

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