Second round of Rituximab

[Sprite60A]

About to have my second round of Rituximab. I had the first in November last year, it didn’t work until about late March/April (I thought it wasn’t going to work by then), can I hope that there will be some of the Rituximab left in my body and that this new round will start working more quickly? I do hope so, I was just beginning to get around better and now I’m back on two sticks and wrist supports etc. Fingers crossed!

[Neonkittie17]

Ouch. Sorry the symptoms are back with you. I’d say (as someone who had Rtx for 8 years, 2014-2021) that yes, it would seem it’s waning before you’ve been able to get back for another infusion, or another two if you have two as your treatment. Rtx can last longer as time goes on and for me it lasted 6-9 months early days then lasted from 12-18 months, and the final one I had lasted over 2 years, so it can fluctuate. I went down to a single infusion as it was working so well to control the RA..

It varies for people how soon their B cells repopulate which is when RA starts to return. The rheumy/nurse will hopefully see that you need to be booked in at 6 months or whenever your symptoms were noticeably troubling you again. (You are not supposed to have Rtx sooner than 6 months as for some patients it can make the immune overly depleted.) I hope this next round of Rtx will give you a longer reprieve and the RA settles down. 🙏

[Sprite60A in reply to Neonkittie17]

wrote a reply to you this morning but it seems to have disappeared somewhere! Your reply to my question was reassuring and very helpful. Had the infusion yesterday and, I can hardly believe it, but I think I can already feel little improvements. The fact that the reaction can be cumulative is very encouraging. Thanks again.

[Neonkittie17 in reply to Sprite60A]

Argh, I lost my post to you 3 times just now trying to send it! Technology can be frustrating at times.

I would think your feeling of well-being so soon after is more likely to be if you’ve had an IV steroid short infusion just prior to the Rtx one. Was always the way I found it to be.

Yes for the most part of people Rtx is cumulative. 🩷

[Sprite60A in reply to Neonkittie17]

Don’t know why I didn’t think of that! Oh well, it was a nice thought that the Retuximab was already working while it lasted!

[Neonkittie17 in reply to Sprite60A]

I wish it was Rituximab working already but I know from my own experiences starting on Rtx how the IV steroid makes you feel better for usually a few days to a week. If you are having a second Rtx infusion 2 weeks after the first, then you’ll get another IV steroid just before your Rtx and you’ll feel lifted again, and by then it will be hopefully not too long to wait until you feel Rtx working for you. Thinking of you and wishing you all the very best. 🩷

[Sprite60A in reply to Neonkittie17]

Thank you so much for your concern and help. I’ll do my best to be patient!

[Neonkittie17 in reply to Sprite60A]

Try to keep occupied with a couple of good books if you can concentrate to read or podcasts were my thing when I was in bed for a couple of months waiting to start Rtx. I’m

Hoping Rtx starts to work for you very soon. 🙏

[bpeal1]

From my experience subsequent rounds of Rituximab do seem to work quicker. Hope it’s the same for you.

[Lolabridge in reply to bpeal1]

Yes I agree and the effect is cumulative too - subsequent infusions work faster and better!

[Sprite60A in reply to bpeal1]

thank you. Had the infusion yesterday and it already looks like you’re right!

[bpeal1 in reply to Sprite60A]

That’s most likely the effect of the steroids they usually give as a premed. But hopefully the Rituximab will kick in quicker too.

[Sprite60A in reply to bpeal1]

Thanks Bpeal1. Thought it was too good to be true!

[Neonkittie17 in reply to bpeal1]

Absolutely. I thought the very same on my first Rtx in 2014 and the rheumy nurse said .. no that’s your IV steroid but enjoy the relief it gives you whilst it lasts. 🩷

[Seville7]

hi Sprite,

I had my first infusions early May so I’m still waiting for it to work… 🤞 I just wanted to wish you well as I also am hoping it’s a cumulative effect. I have researched on here and have concluded that although we all hope it’ll work quicker for us … I think it can take until after your second set so I am hoping this is what you discover. The rheumy nurse said it was the he rolls Royce treatment so I’ve held on to that comment 😃

All the very best 🤞🤞🤞

[Sprite60A in reply to Seville7]

Thank you for that Seville 7. My first infusions took so long to work that I thought it wasn’t going to, then one day there was a sudden feeling of improvement in one knee. After that it just got better and better until it began to tail off again about 4/6 weeks ago. As you say, hopefully it will be quicker this time - I look forward to it, one knee is causing me quite a lot of trouble! Good to know it’s the Rolls Royce of treatments, that promises much!

The best to you too!

[Shresworld]

Here I am again. I never should have stopped taking them the last time. It worked great a few years ago, but I thought I was cured. Then, it started all over again. I went on Enbrel and did get a little relief, but now I'm off my Enbrel. I get my Rituxan in nine days. I'm not doing well at all. I have so much pain in my hands, and now it's starting in my feet. Please pray for me as I pray for all of you. 🙏 🙂 😊