Rituximab Advice please

[SALI]

Three and a half months after first sessions of Rituximab I started struggling with my joints after total euphoria and pain relief. Have suffered since, but due for next treatment tomorrow. I also have osteoarthritis so differentiating joint pain impossible. Question? Is this as good as it gets? If I know, I can live with and manage it. Will Rituximab control RA more over time and continued use. I was on biological for years until withdrawal after two primary cancers so didn't have this problem. My body and mind are confused from all the highs and lows of out of control RA for the last 2 years. Basically will it get better over time? Thanks my lovely people xx

[J1707-]

I was told if it didn’t work after 6 weeks it wasn’t going to and I was changed to Rinvoq. Each rheumatologist is different might be best to have a chat with your consultant

[SALI in reply to J1707-]

Thanks so much for replying. Telephone consultation 25th March. It is working but no for long enough for my liking. Didn't know there are alternative brands to try, as this is s new treatment area for me. I think it is frustrating for me to be back in the trial and review stage of getting treatment. Wishing you well x

[AgedCrone]

I can only speak for myself, but I found it kicked in slowly……I had my first set of two infusions in 2016, changed to only one infusion 6 monthly after a couple (I think ) of years & now I am on just one infusion every 9/12 months.

But do have a word with your rheumy team..if you are not happy…but don’t communicate that…they will think you are happy & just carry on as you are.

It is so convenient..it really is worth persevering if your team think it’s worth it.

Good luck,I hope you are one of the lucky ones it does suit.

[SALI in reply to AgedCrone]

Thanks AgedCrone. I hear what you are saying. I am starting another stage in my living with RA life. Adaption and acceptance! I'm 70 this year and I am tired. Best wishes

[AgedCrone in reply to SALI]

Well Sali you,ve got a long way to go to catch me up…..but acceptance is definitely the key word with this disease.

So chin up & keep up the infusions- I really hope it works for you!

[SALI in reply to AgedCrone]

Thanks so much. I appreciate your insight. And thanks for all the wisdom and experience you bring to this community. I was devastated and terrified when my biological was withdrawn, got complacent and comfortable. Thanks again.

[Neonkittie17]

About 8 weeks before I felt full effects and it can improve even more over subsequent infusions I was told by my senior biologics rheumy. I’m not on Rtx now but it gave me my mobility back and controlled the RA activity perfectly in terms of zero CRP. I had 8 years on it. 2014-2018. Hope it works well for you. It won’t make your OA go away but the fact you’re not in RA pain should help with your OA. Less pain and more movement. Hopefully more strength for you too. Did for me anyhow.. Good luck.

[SALI in reply to Neonkittie17]

Thank you for info and support. Definitely feeling a bit fragile at the moment x

[pammi2]

ive had one infusion and second one next week. i am on 5mg steriod but since satrday mwrists are killing me. I have contacted rheumy nurse 3 days ago and as expected NO ONE has replied..

[SALI in reply to pammi2]

Hope you get some relief soon xx

[janmary]

I’ve been having RTX for 3 years - the first pair of infusions took 3-4 months to have an appreciable effect but subsequent ones - every 6 months- have kept me mobile and more ‘normal’ than I’ve been since diagnosis 14 years ago.

And it’s so nice not having the bother of injections.

[Lolabridge]

So glad you have had a good early experience with Rituximab - it was my wonder drug after failing on the DMARDS and Etanercept.

I definitely needed follow up infusions every 6 months initially but after several rounds I found I could extend that to 9-12 months. My consultant told me that Rituximab infusions have a cumulative effect and that was my experience. I hope it will be yours too!

[SALI in reply to Lolabridge]

That's great to hear and what I was hoping for. I have had a really instantaneous reaction but it wore off too quick xx