Rituximab

[Flowers2020]

Thanks everyone for responding and sharing your experience of taking rituximab. How long did it take for you to notice the rituximab working after the first infusion?

[Jemmel]

After taking Rituximab for 6years now every 6 months I find it feel better energy wise within 2-3 days. But that I think is the steroid you have with it. Then to de flare 2 -3 weeks.

Hope that helps but it can be a very individual thing. Everybody is different.

[allanah in reply to Jemmel]

Felt better after a few days then better in joints etc after 3 months I think ...

[Flowers2020 in reply to Jemmel]

So do you always have to take steroid when you have the infusion? Is that the only time you take steroid?

[Jemmel in reply to Flowers2020]

I have a steroid whilst having the infusion. Dont know about anyone else. Also if I'm flaring badly before the 6 months is up then I can have an injection to tied me over.

[Flowers2020 in reply to Jemmel]

Ok thanks

[Lolabridge in reply to Flowers2020]

When you go to have your Rituximab infusion you will probably be given some paracetamol, an antihistamine and a steroid. I believe these are to minimise any potential adverse effects whilst you have the infusion. (I’ve not experienced any with mine). You may find the effects of the steroid take some hours to wear off ( I find it harder to get off to sleep that night).

You will be observed and monitored by a specialist nurse throughout so there’s nothing to be concerned about.

I found some relief fairly quickly (steroid) but the Rituximab really Became most effective for me from about 12 weeks.

Good luck. Hope it works as well for you as it does for me.

[Flowers2020 in reply to Lolabridge]

Thank you!

[Lyndy]

My first one took 15 weeks to work but once going it has really helped xx

[charisma]

Hi Flowers2020

I started Rituximab infusions in Dec 2019.

We get two infusions with two weeks between each one; mine were on 10th and 24th Dec.

Before the biologic drug, I was given paracetamol to swallow. Then a pre med drip with steroid and antihistamine. A half hour to an hour later, they started the Truxima (brand of biosimilar).

You should be getting a leaflet etc, full information on what to expect. Allow seven hours for the first infusion.

I began to feel better approx four weeks ago. This was about 15-16 weeks after the infusions started.

I am still feeling improvements now and just finished tapering off the Prednisolone that kept me moving for months before the drug infusions began to benefit me.

[Flowers2020 in reply to charisma]

Thank you charisma for your message. Have you had any side effects from it during or after the infusion?

[charisma in reply to Flowers2020]

Yes. Very wiped out for two weeks, headache.

Then flashes and chills. Headaches continue even now. But not continuously.

[Flowers2020 in reply to charisma]

Oh ok, sorry to hear that. I know it’s different with everyone but helps to know what to expect. Thank you

[charisma in reply to Flowers2020]

Most say it gets even better after the second pair of infusions. 🙂

[Flowers2020 in reply to charisma]

That’s good I hope it does and gets better for you

[AgedCrone in reply to Flowers2020]

Don’t expect any nasty effects Flowers....every single person has a different experience....just look forward to settling on it really well.

I have been in Rtx for four years now & have found it to be thd best drug I have had since 1999.

[GranAmie]

felt better 1 week after 1st infusion and again after 2nd, both June 2017. No pred taken since. They told me to let them know when I felt it was needed again, usually abt 5 months so cd get six monthly infusions but have managed, so far to hold off until 11-12 months.

I was amazed 2be offered it in my mid 70s but it, and they, have served me well. Best wishes ! x

[Flowers2020 in reply to GranAmie]

Thank you, I’m glad you’ve managed to hold off for that long! That’s really good

[JulezH]

Well mine took ages, I have had 2 rounds of this now (so 4 infusions in total) and the first one took about 6-8 months for me to realise things were a bit looser and not as sore.

[Flowers2020]

That’s my worry that it will take a while before it starts working and in that time my joints will have damaged even more

[Silverpixie]

Flowers please don't assume that this will work for you. I really hope it does. It had no effect whatsoever on my ra, I had no side effects either. The disappointment of being back at square 1 after waiting 6 months for a response was crushing psychologically as I'd already tried 2 biologics. I had to try two more after rituximab to find one that worked for me. I really hope you get a result.

[Flowers2020 in reply to Silverpixie]

I do worry about that to as it’s taken me so long to find the right drugs all these years and now have to go through that process again. I hope it does work

[Otto11]

It took about 5-6 months to show any difference for me. X