At my rheumatology appointment yesterday my consultant came to the conclusion that amgevita has not worked for me and we agreed I would stop that and start Rituximab. Has this worked well for others?
I understand that this is given by infusion every 6 months and wondered how people found that? Thank you.
I can only speak from personal experience…I have been having Rtx infusions going on 8 years now & it has put me in to what might be called remission.
It is really convenient…some rheumatologists still start you off on the two infusions two weeks apart, others have moved on to just one infusion two weeks apart…& if all goes well you are all set…..just blood tests as per instructions.
Practical points…most clinics provide lunch…..but check if yours does. The first infusion can take up to 7 hrs…but don’t panic- that is only to find the optimum speed of the infusion to suit you. Subsequent infusions are shorter..I usually manage on about 4.5/5 hrs,& I usually drive myself there & back - a 40 mile round trip.
Most important….wear pull on trousers…no zips…you wheel the drip stand to the loo,& it’s easier if you can manage with one hand 🤗without a struggle.
Take a book/tablet to pass the time…but I often sleep a lot…depends on the individual
Good Luck…. …..it’s the most convenient & effective treatment I have had in 20+ years. …hope it’s the same for you.
Thank you so much for your positive reply and useful practical tips. It’s made me feel a lot less apprehensive about it all!
Think about it…..max 4 days a year (+ blood tests) & no other meds…if it suits you it’s a no brainer. I don’t take methotrexate with the rituximab, because as Mtx had stopped working for me……there really didn’t seem much point.
Hope you get on well with it!
unfortunately not for me. Yet have heard so wonder results had by others . 🤞your another success story
I've been having retuximab infusions since about 2012. Been excellent. I also take sulphasalazine daily. Some people have methotrexate; however, I can no longer have that due to it attacking my lungs.
Just positives for you, be prepared for a few hours in a chair and take something to entertain yourself, sometimes other people there like to chat. I had my first of this cycle two days ago. They will do your obs maybe half hourly and check how you are feeling. Sometimes blood pressure can go a bit lower but they will slow the infusion down if its needed, probably won't be needed.
The only difference this time was I had to stay an extra hour at the end, was told its new protocol.
We take our own lunch, (Notts), they give us drinks, they will look after you well, just relax and enjoy the day, good luck x
Thanks for your good advice.
if you put rituximab into the search box and filter for NRAS you will get all past posts about it 😊
Thanks for this.
I have now had RTX over 18 months - it took a long time to fully work ( starting from a base of a generalised flare) but has been the most effective treatment in 12 years of RA . No side effects so far - just feel a bit more weary than usual the next day
Thank you - good to hear as I’m getting desperate to find something that actually works for me!
Hi, I’ve just heard they are going to put me Rituximab after also coming to the conclusion that Hyrimoz is not working for me, so it’s interesting to see the replies. I have an appointment on the 22nd but I think that is just to discuss what happens with one of the nurses and not the infusion itself. Initially the Dr was going to put me on a Jak Inhibitor but after a team meeting they decided on Rituximab. I wonder how long this one takes to work? When my steroid injections wear off it’s back to hobbling around in pain. I’ve been on this yo yo of steroid injections for nearly 2 years now and like you desperate for something to work. Good luck with it and let us know how you get on 🤞
Yes I will. I think it will take some time to actually start. I’ve got a nurse appointment on 7 Feb to discuss it - and before that a number of blood tests to check I haven’t developed hepatitis or hiv since last March when I last had these tests. Had a chest x ray on Wed to check for TB (again!).
I think I’ll get the X-rays etc on the 22nd although I had one last year before I started biologics to make sure I didn’t have TB. They haven’t told me to stop taking the Hyrimoz as yet so I don’t know how long you have to stop one before starting the next?
I know it works well for lots of people but please know that it is strong medicine. It made me feel very weak for months after my infusion so I discontinued. I hope it works for you as everyone’s reactions can be different.
Yes I thought it was strong by the fact that it was an infusion. I guess I’ll just have to see how it goes. I definitely need something.
Hi Bookworm55,
I was on RTX for a few years and it was amazing. I felt almost human again. Sadly, my antibody levels aren't good enough to get the infusions now, but fingers crossed they'll improve soon.
Wishing you luck!
Wendy
Thank you. And I hope your antibody levels improve soon too.
I had high hopes when given my first rituximab infusion earlier this year. The only thing I got was side effects particularly a swollen throat. It did lower CRP level a bit but didn't reduce the daily grind of this horrible disease. Advice for when you have an infusion would be wear track suit bottoms as it's hard work when you only have 1 free hand and need the toilet. Also take plenty to drink. Good luck.
Thank you. I’m not getting my hopes up tbh.
Hi Bookworm55 - I am also due to start on Rituximab shortly so I'm interested in other members' experiences. I am on Methotrexate and have 'failed' on three biologics so far (Adalimumab, Amgevita and Stelara). Fingers crossed that Rituximab will prove helpful to us both. Good luck!
And to you!
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