Hello lovely people. I'm dithering as the Amgevita I've been taking for the last six months has worked amazingly well, but with some side effects I can't tolerate. I have now been offered Rituximab and, looking at all the side effects I've scared myself silly. I'm not needle phobic when it's the auto-inject pens but an infusion is something else. Please could you share your experiences of this drug positive or negative. Thank you and may you be as well as possible.
Change to Rituximab: Hello lovely people. I'm dithering... - NRAS
Change to Rituximab
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Gnarli
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if you put that into the search box and then filter for NRAS all the past posts regarding it will come up 😊
I wouldn’t be scared of reacting to the Rtx infusion(s) as you’ll be monitored so closely (every half hour!) Biologics can have some small or more troublesome side effects as you’ve been experiencing, or they don’t do enough to help control the RA, so we make our informed choice and hope what we take works well for us to control the RA. Many people including myself have been on successful RA meds for years before they’ve waned and lost their efficacy, or RA has got worse and needs more control.
Rtx is a very effective biologic for RA and gave me brilliant mobility and my CRP under 5 since 2014. Worked after 6-7 weeks following my first duo of infusions and worked perfectly for 4 years until it persistently lowered my igG below 6 and started to give me lots of infections. Then 4 more years of intermittent hypogamma (igG under 6) Problems like mine don’t occur for all people on Rtx, so what has been my reason to stop isn’t going to affect others, and you’ll be having your B cells and Ig’s tested regularly too so the rheumy will see anything out of sync. I hope you can soon be on a new med to get your RA under control. Ask to talk again with the rheumy nurse if you need to clarify something/voice your concerns. Good luck. 💗x
Thank you for your kind and measured response. I'll do as you suggest
Hope you can start it soon .. and feel improved soon.
Hi Gnarli
Sorry to hear the Amgevita isn't working out for you due to side effects. I have just switched to Rituximab. I had my first infusion on 10th March, and (all being well on the day), will be having my second one this Friday (24th March). I was a bit concerned about an infusion as my first biologic in 2007 was Infliximab by infusion. Side effects wise I was fine, I just (like lots of us it seems) have really crap veins and have had loads of problems with cannula's in the past. The good thing about the RTX though, is the soonest it can be repeated is 6 months (longer if you feel ok) so at least the vein problems won't arise every 6 weeks like it did with the infliximab.
On the day of the first Rituximab however, the nurse was excellent. Very calm and assured, and she got a vein first go and in my right hand (which is usually impossible). It didn't even hurt as the infusion dripped in - as it often does. I had the steroid infusion first (which I understand limits any possible reaction), and was given an anti-histamine tablet. Then, I was given the RTX. The first one does take longer as they titrate it slowly and see how you go. After an hour, it was speeded up a little, then after another 30 minutes, a little more. I think it was speeded up once more before it was finished. Thankfully, I was absolutely fine. My face went a little flushed which continued on and off for about 48 hours. My throat felt a bit odd at one point - but only for about 10 minutes, so that may not even have been connected? As it went on, I did start to get a sinus headache. It did last all evening, and throbbed for a while, but completely gone by next morning. Having said that though, with both Infliximab and Humira I always got sinus discomfort at times and a permanently runny nose, so perhaps that's a minor(ish) side effect common to various biologics. The only other thing was, I felt a bit more tired for a couple of days afterwards. I've been completely fine since - no other effects (thankfully no second head appearing or anything😉)!
The nurse did say to me at one point, that if you are going to have a bad reaction, it usually happens on the first infusion in the first 10-15 minutes, so once you've got past that, they tend to relax.
Obviously I don't feel any different yet, but wouldn't expect to as I haven't even had the full dose! I'm just hoping it likes me and works.🤞 If not, my final option is Cyclophosphamide, and I really don't want that one ...........😳
I hope this helps and try not to worry too much. xx
Ps. I hate needles and never managed to inject myself in 12 years of Humira! (Apart from the fact I couldn't have got the bloomin thing out the packaging or pulled the safety caps off) !!😁
The facial flushing is said to be more the IV steroid that you get prior to Rtx itself I was told. I had the warm face post infusion for 24-48 hours after each Rtx. Hope it suits you. 🙏🏻💗
Aah, thanks for that NK. Very useful to know. I'll have to put on a bit of extra redness calming face powder this Friday in preparation!! 😄Hope you are ok xx
it usually fades after a day of two. I hope all goes well for Friday. 💗 Yes I’m doing alright on Abatacept injections since September thank you. xx
Thank you - I just want to get it done (if you know what I mean)!😊 I'm really pleased the abatacept is helping. It was a long wait for you. I hope it continues.🤞🤞xx
Thank you, I couldn’t start a med that interferes with T cells until some B’s started to return, hence my long wait for Abatacept. It’s strange as I never dipped down after the final/last Rtx in April 2021. I hope Abatacept is doing the good work at the mo and not the remainders of Rtx. 🙏🏻 Will be thinking of you on Friday. 💗 xx
I hope it's the abatacept too.🤞🤞Thank you for your thoughts xx
I was told Rtx had a great success rate as I felt the same re what if Rtx doesn’t do anything/enough? (I had doubts in general with Enbrel failing after 5 weeks and Humira doing nothing for 4 months.) A time of flux re changing meds is never easy. You’re on the path now and after the Friday infusion it will start to make a difference soon for your RA. It might take a bit of time as it’s not immediate for most but I bet in a couple of months you feel so much better and I’m looking forward to you sharing so! Keep in touch and let us know oe how it’s going, xx
Thanks NK. My Consultant has said it can work well for some with severe disease, so I'm hoping, but aware that as always, it could take a while! My other option is Cyclophosphamide, so I'm really hoping I don't have to go to that! I've been waiting to start the RTX since last August but it was delayed in order to get a surgical opinion on my neck. Apparently more deterioration, so a couple more big ops needed (already had one a few years ago). Was supposed to have one in January but asked to postpone (if safe to), as I just couldn't face any more surgery just yet as still getting over the femur surgeries and trying to learn to walk again.🙄 RA has been more unstable than normal too, so wanted to have a chance to get it under control prior to more surgery. Such complicated decisions we have to make, aren't they?! I shall keep you up to date, just haven't been around quite as much lately as my eye inflammation has been misbehaving - grrrr!! Oh well, onwards and upwards as ever, eh?!😊I really hope things continue to improve for you xx🤞🤞
Thank you for being so reassuring. It's daft really, but this year has not been the best so far, and didn't want to tempt fate, and it all going wrong. Fingers crossed your next infusion works it's magic pdq
You are very welcome. We know what it's like to feel wary about starting something new, don't we? It's always worse when you've been having a bit of a tough time too. I hope you're past the worst of it.🤞🤞Thanks for the good wishes - I hope it works soon, but I will settle for hoping it works full stop! 😉xx
I've had 12 infusions now, have been on it since about 2012 and always been ok. There wasn't a lot of choice for me as methotrexate or humira had attacked my lungs and retuximab works differently my rheumatologist said so wouldn't attack me the same. I hope it works well for you too if you decide to go ahead x
Thank you so much for reassuring me. I'm thrilled it works for you and no nasty lung issues 😀
I have been on Rtx very successfully since 2016 & have had none of the side effects mentioned in the literature.I can’t think of a single serious downside except maybe feeling a bit tired for a couple of days after the infusion & was headachey after the first couple ….but apart from that ……for some people either it just doesn’t work…..or it can take a long time to kick in, but it’s definitely worth persevering.
Unless you are very unlucky you don’t feel the needle going in….just don’t look…you will soon be wheeling the drip stand around! After all ….a blood test two weeks before, probably a couple of infusions two weeks apart to begin with, then one infusion every six months………it’s the least invasive treatment I have had in 20+ years.
So discuss your reservations with your rheumy nurse, & try to put all the scary published side effects out of your head ….just anticipate it will suit you….Good Luck with it!
Thank you. Luckily I have veins like hosepipes in my hands, especially if the RD is busy. Big girl pants on it is, then.
A little word of advice….the nurses will probably do this anyway..get the needle inserted above your wrist.. ..…believe me when you are wheeling your drip stand to the loo, it’s much easier if you can bend your wrist…not to mention pulling your pants up & down!
My first infusion took nearly7 hours & drinking squash all day…I learned the hard way. Wear pull on pants too……zips are not easy with one hand…try it & see!
I’ve always had my cannula inserted in the of inner crease of arm/elbow pit/cubical fossa, but nurses do things differently for each patient! I’ve faint veins in my backs of hands.
I'm going to have to wait and see, then. I'll update as and when things happen.
I am sure they’ll make you feel very much at ease. I always felt safe and they gave me every confidence in all they did in my 8 years of having Rtx. I got expert at wheeling the drip stand to the bathroom etc., but the nurse always used to ask if you needed assistance etc.
I started Rx infusions in November - nurses were brilliant - no side effects other than tiredness the next day. It was a good 7 to 8 weeks before I felt it working - and am just beginning to feel it wearing off. Am hoping my next infusion will work sooner and last longer .
Thank you for your positive input. It has helped soothe my mind. I hope your next infusion goes well and it's effects kick in pdq
Yes from my experience it works more quickly each time and there’s a cumulative effect too. So your wishes will probably be granted!
It’s my favourite biologic so far and definitely the most effective - such a shame it depleted my 1Ggs so I had to come off it.
Thank you very much for your kind and thoughtful reply. I'm so glad it helped you so much but sad you had to move on. Onward and upward, as they say 👍
Thanks for the reassurance
No pearls of wisdom to offer but lots of lovely people here offering their experiences which I hope that whatever choice you decide upon things work out for you Gnarli. All my best to you. xx
Rituximab has worked for me over many years now. I would add one proviso, research has shown that the anti-covid vaccine doesnt work so well on people taking rituximab. We are entitled to anti-virals and boosters which is reassuring. But I have been taking precautions despite all the jabs I've received. Apart from that I agree with all the positive comments.
Thank you, Cathie. Yes, I had read that was the case. At the moment I'm most concerned about the kennel cough vaccination my dog will need
Just before Christmas I succumbed to Covid…having had really nasty side effects from 2 AZ vaccinations, then no side effects from Pfizer….but I had a Rtx infusion about 6 weeks after the 2nd Pfizer…which for me was much too soon & the Rtx didn’t keep working. . Thankfully my RA didn’t flare too much, & I’m due my next infusion next month.
I didn’t manage to get the antivirals …everything shut down over Christmas …...so despite all the dire warnings, Age, Rtx & only 4 vaccinations…I was only really poorl for a short time,& apart from being a bit breathless…I’m back to my old self. I really hope Rtx picks up where it left off.
I had 6th jab 5 weeks after my rituximab infusions in September. I wondered whether it would be a problem but it was ok. I dont know whether before/ after has an impact. Anyway I've got my 7th booked in mid April and will be ready for next rituximab in about June. Its useful to hear your experience.
I was the other way round..,vaccination then infusion too soon….so iI was lucky I had never had any pulmonary infections….I was tested & knew I had no antibodies …in fact I think I just sneezed & cried my way through Covid. Friends who get bronchitis every winter had a much nastier time & were coughing months afterwards.I just had a little dry cough,& was left a bit breatless…I count myself very fortunate.Just hope that infusion works next month.
I have nothing useful to offer in terms of rituximab but just wanted to say good luck and I hope it works out well for you 😘
As with alot of these drugs its a suck it and see approach half the time x
Thank you for your kind and sensible response.
Hi there 😊 I've been on Amgevita for a few months now but my jabs haven't starting working yet so can you please tell how long it roughly takes for the drug to start working and what are the side effects you are experiencing. ? Infusion sounds so scary no wonder your in turmoil and sorry your Amgevita has caused you problems so far so good I've only experienced some hair shedding which is tolerable at the moment. Gentle hugs and the best of luck on your new treatment and hope you get some positive feedback from other people on this drug 😊
If you are ever offered Rtx infusions Kitten15 …grab them!! To my mind, infusions are by far the easiest way to cope with RA. Once you are settled on it, you just attend the clinic two days per year….with blood tests as needed. No remembering pills, or coping with home injections. Once it’s working well you can almost forget you have RA.
I can only speak for Rtx…but it gave me back my freedom…until Covid messed things up!
I have ankylosing spondylitis and lupus that's why I was started on Amgevita but if it doesn't work I'll surely ask for the infusions I'd do anything for my pain to be best controlled it's unbearable at times like everyone on this group chat knows only too well. Gentle hugs to everyone and wishing you all well. Thank you also AgedCrone for your message take good care 😊
Thank you. We are all so different in the way we respond to our meds it would be hard to give a timeframe. I noticed a big improvement in fatigue levels around the 3-4 injection level which was great. Unfortunately, my tinnitus has really ramped up leading to sleep disturbance which is horrible. I would suggest that you contact your rheumy team to discuss your concerns . I wish you well
For me Rituximab has been a life changer. I feel very little pain about a month after the infusion and for me that lasts for 7 months. I'm coming up to being on it for 2 years. I still feel very tired all the time but can just about cope with that so long as I pace myself. The infusion itself is fine, had a bit of adverse reaction with urchins but they slow the infusion down and its then fine. Other than that I've had none of the side effects that I worried about so much. You are never going to know unless you try it as everyone is different. Good luck .
Hi ya.
I've been on Ritux for a few years now. and it's kept my RA at bay. I don't like needles but the nurses are very good at putting the cannula in that I hardly feel it. Drinking plenty of fluid and keeping your arm warm before hand will help your veins to come up. I only have an infusion when I feel I need it and go by my gut feeling. Be aware of side effects but keep them in perspective as we all respond differently. I couldn't even do a auto -inject pen.
Oh bless you. Thank you for reassuring me. I've been on MTX metoject for over five years and am finding the click pens easy and painless most of the time
Hi Gnarli. I know absolutely nothing about Ritux but I wish you well with it should you decide to go for it. It certainly seems to have a lot of positives judging by the comments on here. Also, I hope Suki's vaccination goes well. x
Aww. Thank you. I'm afraid Suki is no stoic and will squeak then demand poached fish and rice and copious cuddles. She has us well trained.
😄😄Bless her and no doubt she deserves it. x
Good luck with Rituximab Gnarli - I hope it’s the game changer for you that it was for me.
You are very kind. I wish it had lasted a bit longer without that lowered 1 Gg effect for you though. It sometimes feels as if we are on a treadmill of meds just hoping to achieve normality.
I just had my infusion of Rituximab last week. The nurses were amazing. They made sure I was ok all the time checking blood pleasure and temperature every 30 minutes. I just felt very tired when I left the hospital and a bit of a headache. Since yesterday I’m feeling that my gums are very sensitive but to be honest I need to see the dentist( hygienist) but I couldn’t get one appointment before the infusion. I will speak with the consult if is ok to go to the dentist now. Don’t worry you will be absolutely fine as I think the Rituximab side effects are better then many tables we table. I wish you all the best! Keep us up date xxx
Oh thank you so much, you're very kind. I'm glad to hear your infusion went so well. Knowing this has eased my fears beautifully. Wishing you well
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