Rituximab reaction?

[Melaxx]

Hi, I had my first infusion of Rituximab the 22/12, around New Year’s Eve I started to feel unwell , I had my second infusion due the 5/01/22 but the night before I had a bit of temperature, I rung them and they said if the temperature was below 38 to go, I went but feeling really weak , the pain all over my body was so bad , even my jaws, I couldn’t eat, because of that they sent me home without give me the infusion.

Today I noticed a rush who wouldn’t go away if pressed in my legs from the knees down , my Gp told me to go to in A&E and they said was vasculites , they checked the urine were negative and the bloods was ok just ck up and they referred me to the hospital, they will call me in the next few days.

Im not sure if having my second infusion I never felt pain like it before , if the side effects are so bad I’m not sure is worth it .

All the COVID tests were negative .

Anyone experienced anything similar , I’m have an appointment with the rheumatologist on Sunday , I don’t know what to say to him .

Thank you 😊

[CarolMcl]

I'm really sorry to hear you've suffered so much. I can't offer advice as I don't start my treatment until the 20th of this month. I know there's plenty of people on this site who take rituximab and some of them swear by it, it's made such a change to them

[Apricot100]

Hi Melaxx, I can't really help but just wanted to say I hope you get to the bottom of this. It's so frustrating and disappointing when we're offered a treatment we hope will work and it has the reverse effect. I have had two rounds of Rituximab infusions over the past few years and they have both helped me. I have had reactions (adrenaline rushes mainly) but nothing like yours.

I've now been told that the effects of Rituximab are reduced with the more infusions that are given so we're back to square one looking for a treatment to make Lupys life more tolerable.

I hope you find answers soon xx

[joanneM200]

Hi Melaxx, I’ve just recently started on Rituximab, 10 th and 24th November. I haven’t had the reaction you describe, but I did have a reaction during the first infusion. Because of that, my second infusion also took the full 6 hours. It’s only just starting to kick in for me but I’m hopeful it will help.

Is it possible all your recent symptoms are not to do with Rituximab? That’s what I’d be asking at your appointment.

It’s too early for me to say, but as far as I can tell people on Rituximab say it’s really beneficial.

Jo

[Melaxx in reply to joanneM200]

Thank you for replying, I’m still go ahead with the second one 28 January and today I’ve an appointment with my rheumatologist, probably the vasculites was going to happen anyway, I’m not worried about the rash on my legs , joints pain , I’m worry about the night sweats and the unbearable headache that I wake up in the mornings they simmer down during the day . I’m glad they do clinics on a Sunday as well ( I think they’re behind schedule) . I’ll keep you posted 😊

[Susiebee31]

Hi I had rituximab 15th nov last year and 30th nov. During the first one my b/p just let rising and slight headache was given paracetamol also pulse rate climbed. On the way home I felt dreadful and then the headache from hell. I thought my eyes were being pushed out from their sockets. I’m already on a large dose of fentynl and also take tramadol. Over the next week I gradually lost the headache and felt a little better. I went back for the second Iv and it was given slowly no raise in no or pulse and definitely not the headache. My problems post drip, I feel hot most of the time. My feet are puffy as well as my hands and I don’t feel yet as though the drip has helped me at all. I have RA not lupus and had to come off cimzia because I was diagnosed with breast cancer. I’m seriously considering not having another round and asking to go on cimzia again

[joanneM200]

I hope you get some answers at your appointment x