Morning all, I had my 1st dose of rituximab & 9 days later I am in full flare mode. In fact I haven’t fleck this bad since I was diagnosed 15 years ago 🙄
My original concern was swollen feet but this is something else.
I’ll be calling RA nurse tomorrow but in the meanwhile, surely this can’t be right?
TIA
Sally
It could just be a coincidence..& the Rtx won’t have had time to kick in - in 9 days.
Of course get in touch with you rheumy nurse…but you’ve had the infusion now, so don’t be too down, try to be positive …..if it works for you it really is one of the best RA drugs we are ioffered. I have been on it for 7 years now & I can honestly say it has really made my life so much easier RA wise.
Fingers crossed it’s the right drug for you!
I wonder whether something else has caused the flare as Rituximab usually takes a number of weeks to begin to have any effect. But when it does it can work brilliantly- it did for me and I hope it will for you. Let your Rheumy team know if the flare persists and perhaps a short course of Prednisolone would help you for the next few weeks.
I received an infusion of Rituximab in November 2021 and had a severe reaction to it, like yourself it occurred several days after the infusion; it is imperative that you contact your rheumatologist immediately to report the symptoms and be reviewed.
Sorry to hear this Ouch. I'd go along with the comments which suggest it could be something other than rituximab - at least worth considering. Is this your first infusion or an unusual reaction to something which has been ok so far? I usually come away a bit sleepily euphoric because of the antihistamine + steroid they give before the long infusion. Its certainly worth getting in touch with the rheumatologist to see what they think. Hope you're better soon.
not sure why for the flare up I have been on it 4 years now and and it has really helped me out. I agree with Aged crone replied. Its now in your system your doctor might you on methotrexate. Also not all drugs work for everyone. My doctor put me on humaria and I blew up like a Turkey it was terrible. Stay positive your body may need to adjust. God Bless.
Hello Ouch41 I have been on rituximab for about 9 years now I had it when it first became available or soon after a wonder drug for me. Changed my life for the better am waiting for a date for my next infusion at the moment. It seems to me that perhaps you were very stressed and apprehensive about your first infusion which of course is a perfectly natural reaction I was terrified of Methotrexate! Perhaps it was this stress that caused the flare? Rituximab does not begin to work for about 6-8 weeks so I very much doubt it was this. Try to look forward to your improved quality of life that will happen when it starts to work and rest is very important I always feel tired after an infusion but it soon passes. As with all flares contact your team for advice they will help you. Very best wishes for the future hope this drug helps you as much as it has helped me and many others.
until a drug starts to work then you can of course have flares or feel you’re getting worse. Hopefully you start to feel better once it kicks in and maybe your rheumy has helped or reassured you by now.
Thank you for all your responses. I phoned my RA nurse & very luckily got a cancellation appointment.
So because I’m in between medications, I’ve had a massive flare. My 2nd infusion is on Friday. I’ve been given some Prednisone in the intern till the Rituxamab kicks in.
Fingers crossed it’s soon 🤞
Thank you
Sally
I only had one dose and thought I was going to die , so I’ll ,other people were having 2 nd dose and it worked for them .
oh wow. Me too! First infusion and I am in a rotten state 10 days later. Written to my rheumatoid nurse asking if this is normal. Fatigue. Bad joints, unsettled stomach- I feel rotten.
Hi
Just reading this thread and wondered if you at all suffered headaches after the first infusion, I had my first 1 on Thursday and have had a horrible headache since then x
yes I had headaches and fatigue and poor sleep and temperature fluctuations for ten days. Did the second and it was not so bad. Nothing good to report, but nothing terrible either. Just an upset tummy for a week and feeling rather drained.
Hi all, well still waiting for the Rituximab to kick in. I had to come off the Luflumamide as it was giving me a very upset tummy & horrible mouth ulcers, same reaction as Methotrexate 🥺
New symptom is very sore swollen hands, pins & needles & really quite severe pain which I’ve been told is Carpel Tunnel which is excruciatingly painful. Beginning to wish I’d stayed on Enbrel 🥺
6 weeks after my last infusion, and I just may be beginning to feel all round better!! Just feel a bit more bendy and hurting less. Oh how I hope this is going to work! I have moved from London to Shropshire and need to change doctors - not that I really got to see any in London, just the nurses - hoping for a good one. I am going to Oswestry. Any one else going there?
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