Yesterday I had my first rituximab infusion, was OK last night but today started with sore throat, now it's swollen and I'm having difficulty swallowing. Only thing that helps is water. I'm really depressed and feel very tired and generally unwell. I was hoping this drug would properly help with what has been a nightmare journey so far. Is this a common side effect ? Not sure if I should call 111 or just try and push through.
Anyone ?
Thanks
Phone. Either 111 or your rheumatology team or your GP. It may be an effect of Rituximab - though doesn’t sound like any sort of allergic reaction - or you may have had an underlying infection before you knew about it and had the infusion, but either way, if you’re finding swallowing difficult you need reassurance so if it were me I’d find out what’s going on. All best and hope you feel better very soon.
Hi RT, Rheumy helpline and ask them to get back to you ASAP and also I’d phone111 too as the rheumy reply might be slow. It is far too soon to expect a result from Rtx. Anaphylactic/similar reactions are usually experienced whilst you’re there having the infusion. I only ever felt tired and flushed for 2 days after, but likely that was the IV steroid re flushing. Are you down to have another Rtx in 2 weeks? I only had one infusion instead of 2 for the last 3 years I had Rtx.
Rtx isn’t known to work immediately as far as feeling joint improvement, although the IV steroid can make you feel euphoric, and less ouch for a few days as those usually do, Rtx depletes all B cells 48 hours after infusion so you’re bound to feel tired in the next month as your body adjusts. It takes some time to work properly (for me it was 5-6 weeks) in terms of feeling joint improvement. The IV steroid at the infusion tided me over to relieve some pain at first. Once Rtx starts to work it can be a life changer and give you excellent mobility and prevent RA inflammation.
Don’t give up as soon as you’ve started but it’s a very anxious time as a full day infusion and all the monitoring and being rigged up to a cannula/drip, etc. can be quite an ordeal when you start, although you do get used to it and it becomes your norm, and you have got a side effect to add into to all of this, so I would phone 111 to speak to someone for reassurance. Your rheumy nurse or rheumy should definitely be made aware of what’s happened. Mine always said your must tell us of any reaction. Good luck and don’t give up on Rtx as it can change your life and mobility and control the RA. 🙏🏻💗
This is interesting I didn't realise the B Cells start getting destroyed that soon! I've never had the way Rituxumab works explained to me, I have the infusions and off I go! I could always "google" I guess, I know it destroys B Cells which cause inflammation but not much more than that.
Yes, they go fairly soon after apparently. For some it can take a little longer (72 hours) and some remaining can take up to 2 weeks to all disappear but the most part are gone very fast I was told. It’s not always a good thing to know too much, but I needed to know more when I got the low Ig’s. I always do want to know more though. Some of us don’t and are more happy not to! Whatever works, isn’t it?! 💗
I want to know everything too 😂 I've just had Covid with a very nasty infection and was googling everything., which isn't always a good thing like you say! Thank you xx
I found this really interesting video on how the drug works youtu.be/h6sGMaf6Yew
Thank you so much, I will have a look later. Hope you are feeling better and get some relief with Rituxumab. 😊
Dear RootsToots, sorry to hear this. As both Amnesiac3637 and NeonKittie have suggested, please do call both 111 and your specialist nurse for immediate medical help, just to be on the safe side. Please let us know how you get on, and feel free to call us on our Helpline on 0800 298 7650.
Sarah
It doesn’t sound like a Rtx related side effect, but as it,s now late in the day to get in touch with your rheumy team…..unless you have the number of the department where you had the infusion…I’d try them, but if not I’d call 111 & emphasise the Rtx infusion & make sure the clerk who answers the phone understands you aren’t just calling with a sore throat & that you really need to speak to a clinician for advice.
Hopefully it’s just a coincidence & you were incubating a sore throat before the infusion.
Good luck!
Hi there RootsToots.
I agree with all the previous posts that it’s a good idea to contact 111 for advice. I also think you may have been developing that sore throat prior to the infusion - lots of sore throat problems about at the moment. Hope you can get the reassurance you need that it’s unlikely to be the Rituximab which can take a number of weeks to be effective.
phone RA team or 111
I am the same. I had my first infusion yesterday. I feel tired today and have a sore throat. I would speak to your doctor about swelling, as I was asked that question yesterday because I had a slight reaction and needed antihistamine. it's better err on the side of caution where breathing could be affected.
Yes, not sure what antihistamine does. I know they only gave me a half dose of it because I have been on a high dose paracetamol and tramadole for a while. I'm guessing it's to prevent the reaction I got ?
You will get side effectscwith all the treatments some worse than others, most take about 3 months to work properly and your body has to adjust to the bio drug, remember all these drugs alter your immune system, good luck.
Update: getting there...Thanks for all replies and concern. I called 111 and was advised to drink cold water and use ice on the area. Luckily the swelling started to go late last night, and today it's almost back to normal again. I have however developed diarrhoea which meant I was up alot overnight. The paperwork lists it as another common side effect. It's a devil that one has to get ill before getting better.
Stick with the Rtx RT…..it really is a gem of a drug, no pills to remember & tbh very few report having nasty side effects.
Been on it for 7 years now, & on only one infusion dose every 6 months…but due to other health problems I just went 15 months wihout it - with only a few niggles.
Give it a few months….don’t let the last few days make you give up on it.
Just take a good book to the loo! 🙄
I've had rituximab for several years now and havent had that. But it might affect your immunity. I got shingles shortly after starting rituximab. So also worth checking with GP or 111
I was told by my Rheumy that Rtx causes cytokines (immune system proteins) to be released to help fight infections but they also can cause inflammation/reactions. Hence the swollen throat and itchy skin/hives reactions some peple can get. I didn’t get either in over 8 years of Rtx so can’t speak from personal experience. Just what my biologics rheumy told me. Also that it tends to happen first time and not so much on subsequent infusions, but they need to know your reaction. I always had a full antihistamine tablet and IV steroid.
yes I would ring , I had this drug felt I’ll after ,ended up in hospital and was told it didn’t agree with me , best to get second opinion .
I also had a severe sore both times I had my infusions so much so I took a strep test. I never really had difficulty swallowing . Also I feel unwell almost the entire month of treatment which I've heard can be common.
When i started in rituximab i had awful gastritis and felt as if i had flu , i now get it at a slow rate and i have no issues. I also used to get sore throat and sinus problems, i gargle with warm salt water and use sterimar saline nasal spray which seems to help. I hope the rituximab works well for you, best wishes.
Thanks, I will look into that.
Yes this has happened to me and I think you should call the unit that you had the RXT infusion done and they will advise you what to do next, contact your Rheumy team or GP but if you can't breath well, swelling in your face etc call the emergency services. Praying for you and wishing you a speedy recovery. RXT can be very hard on the body but it helps to keep a lot of the flares down, wishing you love and light🙏
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