Advice about Ritixumab

[mattcass]

I received my first infusion last Tuesday, the first 2/3 days I felt so tired but i was feeling fine, Last night I was in pain due to a large abcess at the top o f my right leg then I went to bed and within minutes my RA hit my ribcage and and back, I started to struggle walking, going to toilet, I could not breath normaly I checked my sats and it was 83 and stayed that way for a while, Then i started to shiver and that stayed with me till 8;30am I was trying to motivate myself then my sats were 79 for a short period, Since then trying to get my sats up but it did not get above 87 and that was, Has any one been in this position and what was the outcome, Thx Matt

[Lolabridge]

Hi Matt. Sorry but I’ve never had a reaction like that after an infusion of Rituximab. I suggest you contact your patient helpline for advice or contact 111 if your breathing gets worse. It will take a number of weeks for the Rituximab to take effect so maybe you are flaring as the methylprednisolone “chaser” you will have been given first is wearing off.

Hope you feel better soon.

[Neonkittie17 in reply to Lolabridge]

I always feel euphoric the next day and can do anything like I’m superwoman then the iv steroid wears off after about three days.

[StormySeas in reply to Neonkittie17]

Haha, exactly! Me too. Then I realise it’s the steroid! I’m almost ready for another round, keep trying to eek it out as long as I can…

[cathie in reply to Neonkittie17]

Effects of steroid are limited for me by them sending blood sugars through the roof. Even if you’re not diabetic it’s worth being careful what you eat after infusion- light on carbs.

[Neonkittie17 in reply to cathie]

My blood sugars aren’t an issue but I know very well how steroids send those soaring. 🤨 I’m really good on what I eat so I don’t ever overload on carbs/sugars even if feel hungry after.

[Jackie1947]

I wouldn’t hesitate to ring 111. I hope you feel better soon.

[Neonkittie17]

Hi Matt, well done for having your first Rtx infusion. 👏🏻 I think it could be likely be the hydrocortisone IV they give you pre- Rituximab (presume they gave you this?) and you can have hot flushes and shivering later in the evening/next day. I am always flushed in my face and quite spaced out the Piriton antihistamine knocks me out too and I sleep a lot at the infusion! Has the abscess appeared since your Rtx? Do report this to your rheumy nurse as they need to know with it being your first one especially. Hopefully things will calm down and it will work well for you. I say it’s better to speak with your nurse and say how you felt/feel than think you’re bothering anyone. They could quickly reassure you/advise you and you’ll feel much better for it. 🙏🏻 It’s normal to feel tired after Rtx. I feel it also two weeks after which is usually when the B cells are packing up to go on holiday! It’s a very powerful med and also a stressful event first time, so yes it’s tiring. Keep a note of all your reactions, etc.

[StormySeas in reply to Neonkittie17]

Great advice Neonkittie17

[Neonkittie17 in reply to StormySeas]

Thank you. Hoping Matt soon feels better and the side effects go.

[StormySeas]

Hi MattSorry you feel so awful. I agree with the others and think you should speak to rheumy nurse / 111 if you haven’t already done so.

Do let us know how you get on. Hope you’re feeling better by now. I’m on RTX too and feel a bit weak and feeble for a while after the steroid wears off, but your reaction does sound very strong.

Kindest regards

[Bully915]

Hi the cut off numbers for your Sat's is 92 anything below should be reported to your go or e and a if your worried you should have them checked out immediately

[Angels54]

Yes, sorry to say I was so ill , lost two stone , couldn’t get out of bed , I can’t explain the feeling, however a couple of ladies had it twice and found it ok , everyone is different, I really hope you recover soon , I had 3 steroid injection within 10 days , took me a while to recover.Good luck

[Neonkittie17]

Hoping you’re alright, Matt? Please let us know if you can.