Rituximab finally but ..: Was finally approved this... - NRAS

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Rituximab finally but ..

RootsToots profile image
10 Replies

Was finally approved this week for Ritibumax. Its been a very long 5 months waiting for them to tick the box and for me to get to the front of another invisible NHS queue. Problem is they want me to stop the Benepali this week and then I have 5 weeks before the first infusion. The nurses are calling it a washout period. I know that because the RA is still so aggressive that within 10-14 days of stopping my Benepali which is still working a bit...I will be unable to walk or work. I have pleaded with them to extend the Benepali pens a bit closer but its looking like another funding issue... so can anyone tell me if 5 weeks is a normal amount of time to wait between drugs ? Also has anyone experience anything bad with Ritibumax infusions. I'm a bit apprehensive but also fed up with the impact of this illness. Thanks.

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Neonkittie17 profile image
Neonkittie17

I had a wash out of 6 weeks from Humira to Rituximab. Humira did nothing for 4 months I was on it but it was still in my system. I hope Rtx works well for you and the infusions were never a problem for me. They take such excellent care of you and you are monitored so closely. Rtx is no longer my biologic med but it worked so well for me for many years. Can you speak to your rheumy re pain management for your RA if you feel it’s too painful at the at the mo. It can be an awful time between meds and I fully sympathise. Once Rtx works for you you’ll be able to move better and feel no pain from active RA. My CRP went down after the first 2 infusions and stayed under 5. Good luck and hang in there. 🙏🏻💗

bpeal1 profile image
bpeal1

It was a long time ago but I’m sure it was at least 6 weeks between stopping my biologic and starting Rituximab. I do remember they gave me an intramuscular steroid injection to tide me over. Is that a possibility for you? Might be worth asking your rheumatology team.

janmary profile image
janmary

I had to stop Benpali ‘at least’ 6 weeks before RTX and had already had to stop Mtx. They did give me an IM steroid to tide me over. The infusion process was fine - I felt very well cared for - but it took a long time to work….

Pulfs profile image
Pulfs

I’ve been on retuximab for over 12yrs and also take methotrexate and hydroxychlorquine. I ask for the infusion to be put through slowly as it can make throat very sore and prickly. A steroid and antihistamine is put through before retuximab starts. Drink lots of water while there and take a book or something to read as it’s a long day. I also take my own packed lunch . Hope you get on ok with it x

Babaj12345 profile image
Babaj12345

I had my Ritxamub 4/5 weeks apart by infusion it worked for a few months I’m now doing my own injections of sarilumab and I have less flare ups bear with it

bpeal1 profile image
bpeal1 in reply toBabaj12345

Are you sure that was Rituximab? Rituximab is given as 2 doses 2 weeks apart and then 1 or 2 doses at least 6 months later.

Tocilizumab if given intravenously is usually every 4-5 weeks.

Lolabridge profile image
Lolabridge

Do ask your team for something to help you through the interim period as it could take a few weeks for the Rituximab to take full effect. But I hope it will work as brilliantly for you as it did for me - such a game changer.

Hi, ive no e penitence of washout but started ritux last June.initially was very disappointed as I was feeling so ill with continued disease activity and I seemed to be getting worse but after my last one I could really feel a difference with my mobility.

Hope this continues and ghat you get some relief too.

65_women profile image
65_women

I have been waiting for since Feb 28th and just got my letter that last week. And won’t be able to get sometime at the end of May.

RootsToots profile image
RootsToots in reply to65_women

I'm sorry to hear that.

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