Rituxamab Infusion

[SammyJ]

Hi. I had my first Rituximab infusion yesterday. Was very breathless last night and had the most awful chills. One minute I was changing my pjs as they were soaked through with sweat, the next I was dithering and couldn’t get warm. I was also on the loo needing to urinate every 20 mins and feel shaking and generally unwell. Is this normal, anyone else had these symptoms pls?

[weathervane]

Hi Sammy , i felt quite unwell after my first infusion, I felt like i had the flu and i had awful gastritis. I have had the the infusion at a slow rate each time since that and i find it easier to cope with. If you are worried and are still feeling unwell do phone your gp or rheumy nurse , i hope you are starting to pick up again, do take it easy 🌸🌸

[SammyJ in reply to weathervane]

Thank you. How long did your symptoms last for? I have emailed my consultant and spoke to GP but she had no idea what to do!! Just feel like I have no energy and these hot snd cold chills are awful

[weathervane in reply to SammyJ]

The symptoms lasted over a week for the first infusion, i also had hot flushes all over and a couple of nights of poor sleep which I still get but thats due to the steroid part of the infusion. Do try to contact your rheumy nurse as well though could be a number of days before you get a reply . If you feel any worse get straight to your Doctor again . Best wishes xx

[SammyJ in reply to weathervane]

Thanks for the advice. I have a week of feeling rubbish to look forward to then 😂. I sure hope this is all worth it snd it helps my joints. Has it helped you?

[weathervane in reply to SammyJ]

Aaah Sammy everyone is different, hopefully by tomorrow you will feel better, do take it easy and drink plenty of fluids . The rituximab has really helped me so yes 100% worth the side effects .

Did you get it in one dose or do you have to get second infusion in 2 weeks? I have read posts were people are getting it in one dose because of covid , wondering if that is hard to tolerate .

[SammyJ in reply to weathervane]

No I have to go back in 2 weeks so I suppose I go through this again. I hope I’m one of the lucky ones it works for as my consultant says it’s 50/50 if it works

[weathervane in reply to SammyJ]

Good luck Sammy , stay positive. I felt more benefit after second round , worth waiting in my case 🌸🌸

[SammyJ in reply to weathervane]

Thank you. Really appreciate your advice. Take care

[tree_shadow]

I just felt light headed for a little bit. (And tended to fall asleep during the infusion)

[SurferGuy in reply to tree_shadow]

I've had Rituximab twice. When they give this to you, they also give you antihistamines which will make you drowsy. The first time round, I was sleeping for the first 2 days. Then slowly recovered on the third.

Second time round, for some reason, I was bouncing off the walls the very next day. In fact, if memory serves me well, I actually did the whole garden the next day - picked up the leaves, mowed the lawn, trimmed the edges and bits and bobs sticking out from my fences.

First time round, I felt a massive difference with it. But second time round, which was a smaller dose, I didn't really feel much relief.

[SammyJ in reply to SurferGuy]

Wow that’s interesting. I have felt so poorly since Monday having my first dose I’m wondering whether to go for second dose if I feel like this. I have no energy, feel sick, don’t want to eat, terrible shaking and chills. I’m so confused at the mo what to do. I was told it doesn’t start working until 2nd dose but I have heard so much mixed info not sure what to do

[SurferGuy in reply to SammyJ]

Sammy, I'm sorry you're feeling so bad. Have you spoken with your consultant about this?

Everyone reacts in such different ways to drugs. I remember when I was taking azotyoprine and methotrexate, I'd fee drained and nautious for a good 2-3 days. But so many were able to tolerate it.

Riuximab does take 2 doses and a few weeks to feel the positive effects. So please do speak with your consultant for further advice.

In the mean time, in situations like this I find sweet and sour sweets help with the sickness side of things. And they taste good and make you feel like a kid again