Rituximab Side effects....or not?!


I had my first Rituximab infusion (second cycle) last Friday 8/4, for the first couple of days I felt exhausted but that was probably due to the extra anti-histamine.  Sunday evening I just could not get to sleep and this has been the case all week now...my heart felt like it was racing and I felt like I'd drunk 6 extra strong coffee's ( I do not drink caffeine). 

I rang my helpline and they suggested I go to see my GP...which I did, they did a ECG and Obs but these were all normal apart from having a slightly fast heart rate.  My GP rang the Rheumatology Registrar at the hospital to be told this can not be the Rituxumab causing this!!!!  I did a bit of searching on Dr Google and this can be a side effect so I'm wondering why it's not been acknowledged....it could be the steroids but they don't usually make me feel like this, I knew I wasn't going to feel great as the drug is resetting my immune system but I'm perplexed why a possible side effect has been dismissed as I did not feel like this before Rituxumab.

I've written this post to ask the "experts" on here if they've ever felt this way after an infusion...I do not remember feeling like this last time...I felt really tired though and could actually sleep!!!  I am going ahead with the second one as I need to feel better and get my life back but I will ask for a second opinion before I start it.

Thanks for reading! 😊

19 Replies

  • Feel exactly the same on it, thought it was the steroids too. 

    Just had a reaction tho after my 3 rd cycle but that itching red etc and doc taking it seriously. 

    I get exhausted with mine but then can't sleep xx 

  • Thank god for that...I thought I was imagining it and I've just found that sleeplessness can be another side effect!!  My GP has been brilliant...hospital not so!!!  I hope your reaction is improving and you're ok for round two....don't mind putting up with these side effects if they're temporary and we are going to feel the benefit!!  Thanks A for replying  x

  • Hi, could it be small IV steroid they give you prior to the Rutuxi?  I've never had this in my two lots of treatment ( just about to have my second of the duo in my third round of infusions) but I know separate joint hydrocortisone shots can make you euphoric and have made me hot and heart rate increased a little bit but nothing that didn't right itself after 24 hours.  Even one anti histamine zonks me ... They were shouting my name to wake me up for my blood pressure at the infusion clinic!  I am glad you've had an ecg to out your mind at rest and hope Rituxi is working well for you very soon.  

  • Hi...welcome back..nice to see you posting again!  Thanks for your reply, yes I thought it may have been the steroids but it seems unlikely as its such a small dose and I don't normally react like this!  I'm convinced it's the Rituximab and insomnia is a listed side effect even though my hospital doesn't recognise it...I will ask again when I go next week for round two!  I hope you're well and how have you got on with Rituximab, I remember you posting when you were very poorly? 

  • Hi 3LB .. Thanks for asking! Vice been trying all the time to get back on but my messages  would never post!    Will update you a bit later tonight as I'm making a late supper. I'm going for the second of my Rituxi duo on Monday.  I wake up quite a lot in the night .. Well did .. but it has improved slightly but I attributed that to meno things as I was warm on waking and thirsty.   

  • littlebirds I don't have any advice for you because I have never tried the infusions but I do hope that you manage to get your sleeping patterns sorted out soon.  I know what it is like to have sleeping issues.  I do hope that you manage your sleep back on track soon.

  • Bless you...thank you x

  • No prob.  Look after yourself yeah.  I don't know if you can take any herbs or herbal teas or magnesium etc but I have found doing things like that def help me sleep.  Take care.  :)

  • Hi. Following my first round of Rituximab  during which I had extra antihistamines I was so tired afterwards and hot with sleep problems for a couple of nights. I put this down to the steroids given prior to the infusion. During  the second infusion I didn't need extra antihistamines but still had prior infusion  of steroids.  I can remember being tired afterwards but quite so much. After a few days following both treatments everything went back to normal.  I am now 6 weeks post treatment and early this week I had a couple of days of feeling great. It's early days but I'm living in hope for a mark improvement.  Stick with it.

  • Hi

    I have just had the first part of my 8th cycle and woken with my symptom of a hot red face. This has happened before and I know it will calm down in a day or two. Sleeping is difficult and I put this down to the steroids but I have the dozy feeling that makes feel really tired. I am pleased to see the swelling in my knuckles is down no doubt due to the steroids. My hands still hurt. Early days - I find it is about 6 weeks before the side effects subside and I feel better than I did. I have chest problems so have had to wait 18 months for my health to improve for this cycle. overall I have to weigh up the risks and quality of life.

  • Thank you for your reply I really appreciate it especially as you've been having Rituxumab for a while...I can absolutely identify with the dozy tired feeling but unable  to sleep  and I agree it's worth putting up with it if we are eventually going to feel the benefit!  Good luck and I hope this infusion is a success especially as you've had to wait a while for it. 😊

  • Hi. I've had seven cycles of RTX now. I always get nervous about it because of the side effects but it has worked really well for me, so I keep having it.  After my last one, in February, I also had the racing heart thing. It's scary. My sleep patterns were all over the place, and my skin was itchy, and my face red. These seemed to me worse than before, and it made me anxious, which didn't help. When I mention it to the rheumy or GP, no one seems over concerned or say, well that's not a side effect, or you're fine, just relax ! We are the people taking the stuff! It amazes me how many of us on here talk about the same noticeable side effects and are not particularly reassured! I just keep notes for myself and I always mention them before each round. At the moment I'm feeling ok apart from sore fingers. Hope you feel better soon, and it all settles down. RTX is the only drug I take. X

  • priss I went through the same thing with my rheumy spoke about possible side effects of meds and at first was just ignored and then was told to come in and talk about things but I don't know I did get the impression that they don't like talking about possible side effects until they are pushed maybe to do just do that.

    even though I understand that the infusions work for some people I decided to stay away from them because I could not juggle hypothyroidism and being on these infusions.  We are all different but I am still suffering from side effects from when I had my hormone imbalances.  Think it is great though that the infusions some of you.

  • Hi Priss...thank you so much for replying and for identifying with what I'm saying as it did make me feel like I was imagining it!! You're right about Rheumy's not taking it seriously as I had exactly the same response even though I know my own body, I didn't have it before ...and it's a listed side effect....my GP was very good though and did take it seriously and has offered to ring me a week after my next one to see if I get the same effect...she did all the ringing for me as well as I didn't get a response from the helpline but I appreciate they are busy.  Like you I am going to keep notes and I will mention it before my second one on 22/4...we do defitnetly have to self manage our condition somewhat I feel and the longer I have it the more I'm learning?!!   The racing heart thing is not a nice side effect not that any side effect is nice but this one i find distressing as it stops me from sleeping...hey ho as long as it's not long term.  It's very encouraging to read you've had a good response from Rituximab and long may it continue for you, Good Luck 😊

  • I have just found your post about Rituximab side effects....that's very useful too especially as you've had replies from some long term ers!!  I think the people actually taking the drug or having the disease are the best ones to consult about side effects in my experience!!! Thanks again x

  • It is a side effect, I have it after every infusion, lasts around a week to two weeks and then slows down. I have trouble with racing heart though during the infusion as well so they infuse my second dose at the same rate as the first rather than speeding it up and this helps during and after the treatment. 

  • Hi Purplecats...love your pen name by the way!  Thanks for your reply and confirming its a side effect.  I had a reaction with the first infusion both times now...itchy head/ears, red hot face, so I expect the second one will be at the same rate again but I really do not mind this...I would rather have it slower!  Hope you're doing well on Rituximab. 

  • Hi there just joined forums recently and have just read your post . I had a similar reaction as yourself to rituximab ie very tired fo nearly a week afterwards but had difficulty sleeping. The RA nurse warned me that the steroid infusion might cause this. I also had severe stomach pain 7-10 day after it with nausea for another 5 days. Went to doctor who had no idea of cause , spoke to nurse again who said it was probably the steroids so increased omeprazole . Dispite all this I will take another course of rituximab if offered as has made an improvement. Has anyone else had stomach pains? It's good to hear other stories as these autoimmune illnesses effect everyone in a different way😳

  • Hi I had my 3rd cycle of rtx yesterday and had a really bad night last night I just couldn't sleep, my heart feels like it is racing and both my arms feel fuzzy, I hope this is a side effect and nothing else is going on 😥😥

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