Advice for Rituximab please

[Juliesb]

After a telephone conversation with RA consultant today, she is taking me off imraldi and putting me on Rituximab. Can anyone tell me what to expect (Good and bad please). I know everyone is different. I didn't really have any side affects with imraldi, it just stopped working after a couple of years. Thank you.

[StormySeas]

If you do a search for Rituximab, and apply the filter for this community, NRAS, you’ll see lots of similar questions to this. Hope that helps and you feel reassured by the answers

[Juliesb in reply to StormySeas]

Thank you. Will try that.

[Jillyanne]

All I can say is i have been on Rituximab for about 4 years and it works really well , used to get two infusions, two weeks apart and they lasted for about 6 months , since Covid they would only give me one infusion , which only lasts for about 4 months 😢😢😢So will be interested to see if you are offered the one or two infusions

[Juliesb in reply to Jillyanne]

Thank you. Will let you know when it happens.

[Evie3 in reply to Jillyanne]

Thats a shame....still getting my two infusions.

[Jillyanne in reply to Evie3]

Think it’s the postcode lottery 😢😢 I think they are trying to save money at the expense of my joints 😳😳

[Neonkittie17 in reply to Jillyanne]

I was told in 2019 it was to trying to see if it was possible to achieve the same results with one infusion so not to over medicate patients, with it being a very high spec biologic. Also when patients were allowed back in to hospital for Rtx infusions last year after the first lockdown, my nurse said they preferred one all day visit/infusion to two for Rtx patients as less risk during the pandemic at that time. One infusion has worked as well as two for me. If patients need two my nurse said they will get them, but to try have the single infusion first. I’m sorry your single infusion has worn off fast. Hope you can get back in soon.

[Juliesb]

Thank you. It is good to hear things to be aware of and glad you were in remission for a few years. I'm hopeful it will work and it seems that it is a great help for many so fingers crossed it will be for me too. Hope you are currently well.

[Neonkittie17 in reply to Juliesb]

Hope it works great for you. x

[Evie3]

I have been on Rituximab for about 3 years now, after other treatments failed after many years of use. For me it is a less intrusive drug in my life. Its an infusion that initially takes up most of the day (as a day case) and then the same again 2 weeks later and thats it for six months. They give you antihistamine and run some steroid through too. I am not totally pain free but I have a good quality of life by having this treatment. Hope it goes well for you.

[Juliesb in reply to Evie3]

Thank you. I'm not sure I can have the steroid part if it as I am also type 1 diabetic and steroids make blood sugars go mad but it sounds better than I am now. X

[Evie3 in reply to Juliesb]

There was a lady last week who didnt want the steroid, so they omitted it. It meant she had to have it infused slightly longer, in case any side effect

[Juliesb in reply to Evie3]

Oh ok. That sounds positive. Thanks.

[Dave_Buzzey_B]

Hi Juliesb, I was put on rituxmab over four years ago now and I have to go twice a year for four daily visits and can honestly say I have had no problem with it, I did and still do however have with the anti dote they gave me before they give me the Rituximab as I am sure your RA told you but don't worry they were not to bad it just make me very sleepy with dry mouth for a couple of days. other tan that all is fine.

[Juliesb in reply to Dave_Buzzey_B]

That's great. Thank you.

[Dave_Buzzey_B in reply to Dave_Buzzey_B]

also forgot to add it helps me tremendously, when I go for it. I go in for once a week for four weeks.

[Neonkittie17 in reply to Dave_Buzzey_B]

I would think that’s probably not for Rheumatoid as RA Rtx patients usually have a different schedule for receiving it. Glad to hear Rtx is working well for you. 🙏🏻