Ritixumab : Has anyone had a ritxumab infusion since... - NRAS

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Ritixumab

Bobbarge profile image
Bobbarge

Has anyone had a ritxumab infusion since covid, I’ve been told it’s not advisable due to the risks but I’m now struggling and using etoricoxhib & hydroxychloroquin daily but it doesn’t compare.

47 Replies

Hi, I can't help you - sorry. But I've just been prescribed Rituximab and have had my first vaccine, but not my 2nd.

I had my last cycle of Rituximab last August and I'm waiting for the next. When I asked my nurse could we schedule the next cycle I got a text message saying I have been given an appointment with my consultant on 22 April "to discuss Rituximab infusions" which is making me think it may not be straightforward. I'm wondering whether I will be asked to switch to another drug instead but having failed on all the three DMARDS and one other biologic I'm somewhat anxious about that.

Moomin8 profile image
Moomin8 in reply to Lolabridge

How did you get on with Rituximab?

Lolabridge profile image
Lolabridge in reply to Moomin8

It changed my life! Can’t face the thought of being without it. I started having it every 6 months but last interval was 9. Now I’ve been waiting 9 already ... and I’m creaking!

Moomin8 profile image
Moomin8 in reply to Lolabridge

Great to hear that it has helped you 😊But why the wait now? When I had my face-to-face appointment this Wednesday, the rheumatology nurse applied for the funding immediately and said I should get it in the next few weeks. My worry is that my next Covid vaccine is 24th April. I don't want that pushed out further.

AgedCrone profile image
AgedCrone in reply to Moomin8

Just seen this post...is this your first Rtx infusion.?You will almost certainly need to wait at least a couple of weeks after your second vaccination to have an infusion.

Moomin8 profile image
Moomin8 in reply to AgedCrone

Sorry, hadn't seen this - thanks 😊Yes, it will be my first - bit worried about it to be honest.

Lolabridge profile image
Lolabridge in reply to Moomin8

I suggest you contact GP and ask for your second dose of vaccine to be brought forward as you will probably need to wait 4 weeks before your Rituximab can be given.

Moomin8 profile image
Moomin8 in reply to Lolabridge

I have tried - to no avail.

Bobbarge profile image
Bobbarge in reply to AgedCrone

Been on ritx for 7years

I hope not Lola. Has Rtx been working well for you because if so I’d have thought they’d not want to disturb that, but I was half expecting to hear, due to the way Gov.uk worded their advice, that patients may be told they were not to start on it. Having said that, we’ve had someone on here start on it very recently, so ......

I’ve not been alerted to stopping it myself due to the rheumy’s recommendations. I spoke to my nurse two weeks ago and she booked me in for my next infusion. I did only have one infusion last September for the first time as the hospital were wanting to do that anyhow in accordance with new Rtx policy and also my nurse says they wanted have less people going in to the hospital.

Your text is very likely to be a standard one and maybe they are now moving to one infusion instead of two? I wish the nurse had been able to speak to you. Maybe some Rtx patients have said they don’t want to continue with Rtx due to possible future vaccines and the interruption to treatment. Hopefully you can stay on it. They may be asking if Rtx patients if they want to change rather than trying to initiate that. It Isn’t fair to make you feel anxious by being evasive as such on the text. Hope all is straight forward when you get there. X

Yes I’m probably winding myself up unnecessarily. But when you live alone and are trying to live independently the thought of being switched to another drug that doesn’t work as well as rtx is a concern. ☹️

I hear you. 💗 I live with my hubby but still my Rtx side effects worries and will I have to change due to repeated bronchitis? .. go round my head and he helps enormously, but at the end of he day it’s my decision. I am anxious at the thought of if I have to change from Rtx too so I understand your concerns totally. I think it is a standard text and they’ll ask you if you’re happy to continue on it. Could well be your hospital are also changing to one infusion instead of the two. A single Rtx has held so far for 7 months for me and will be over 8 when get my next. If they do try to suggest an alternative I’d be very strong in reply on why you don’t wish to stop it. I had Sulpha, Mtx tabs/Mtx solo sub cut, Leflun, Enbrel and Humira before Rtx so understand you well. Happy at any time to chat on PM or here. 💗x

Thank you. Let's keep our fingers crossed. x

I will keep them crossed for you. x

I had an infusion on Tuesday....it had been due in February but was delayed to get vaccinated. I just said I needed it & my rheumy nurse arranged it ....just needed a Covid test first. .... no problem at all.

But like a lot of things it may be an area or a hospital decision.

Moomin8 profile image
Moomin8 in reply to AgedCrone

How long after your vaccine (2nd I am presuming?) did you have to wait for your infusion? How are you getting on with Rituximab?

AgedCrone profile image
AgedCrone in reply to Moomin8

Annoyingly I can’t have the second vaccine because of the reaction I had to the first. “They” are deciding what will happen next.

But my rheumatologist had told me previously that I would need to wait at least a couple of weeks after the second vaccination before I could go for my Rtx infusion .

I have been on it since 2016 & not had a single problem with it. ..now I only need a single infusion every 6 months.

Having gone over my usual six monthly infusion I have just had a very nasty reminder of what life was like before Rituximab.

Most of my symptoms have come creeping back and I’m just hoping this infusion will be sufficient to calm them down ....if not I can have another single infusion in a months time.

Hope you do as well on it...it really is the most convenient treatment...at the beginning I had 2 infusions 2 weeks apart...every 6 months .....then forgot it.

Good Luck - it is well worth waiting for.

Moomin8 profile image
Moomin8 in reply to AgedCrone

Thank you for your uplifting reply! I too should have 2 infusions, 2 weeks apart. I was told the first one will take all day and the 2bd half a day. I had to have a blood test to see how my general antibodies were like before I start. How was the first infusion for you...and how long did it take before you started to feel any positive changes? I'm sorry about all the questions - it's always a worry when we start/stop meds 😏

AgedCrone profile image
AgedCrone in reply to Moomin8

I will tell you the truth so that if it happens to you - you won’t be too worried ...my first infusion took over seven hours. The thing is they need to know the speed you can take the infusion. They have an average flow speed and mine turned out to be lower than the norm so it took that long. I came out in hives.....But I was fine when the drip was slowed down ...& then the second took about 5 hours. Prior to the Rtx infusion you are given a saline infusion & that adds about 45 minutes.My first infusion was five years ago and I think it took about three months before I felt it was having any positive affect.

On Tuesday I arrived at the clinic at 1230,& left around 7pm.

But as it suits me so well I’d sit there longer.

Do take something to keep yourself amused. ...a book/kindle....and a wrap or something to keep warm..I always feel cold during the infusion

I seem to sleep most of the time although you can’t have a good nap because they wake you up every 15 to 20 minutes for TPR.

Another little gem..... if you’re going to wear trousers wear the pull on type..... trying to cope with pulling up your trousers and doing up a zip with one arm attached to a drip when going to the loo....

is not the easiest exercise!

Good Luck..let us know how it goes when you start.

Moomin8 profile image
Moomin8 in reply to AgedCrone

🤣Love the top tips - especially the trousers 👖! I was warned that they may have to slow it down to due a variety of reactions - including low blood pressure. Thank you for your honesty - it means a lot x

MissMinto profile image
MissMinto in reply to Moomin8

You will also be given an I/v infusion of an antihistamine to reduce possible allergic reaction, as well as a steroid one which should help reduce your RA symptoms until the RTX has kicked in.

AgedCrone profile image
AgedCrone in reply to MissMinto

Not necessarily.....all patients are individually assessed.I have no steroid infusion & just an anti histamine pill.

MissMinto profile image
MissMinto in reply to AgedCrone

I didn’t realise, I thought that was the standard ‘package’ 😂.

AgedCrone profile image
AgedCrone in reply to MissMinto

It probably is...until it’s found not to be right for you....so do say if you feel something is not quite right. I am very lucky in that my Rheumatologist does listen to me when I tell him the experience I have with the infusions ....and that has led to no steroids and just a pill!

Neonkittie17 profile image
Neonkittie17 in reply to Moomin8

My hospital/rheumy department won’t give you Rtx until a month after your second vaccine. I have seen online advice from reputable medical sources saying it’s 2-4 weeks. I think you have to do what your own rheumy advises.

Blimey! I'll be reeling coming out of the hospital! 🤯

AgedCrone profile image
AgedCrone in reply to Moomin8

I drive myself there & 🏎🏎 back & have never had a problem!I think because it is usually quite a lengthy process people think it must be awful...but it really isn’t.

I certainly wouldn’t keep going back for more if it was terrible. In fact I would kick up a really big fuss if anyone told me I couldn’t have my infusions!

Hi Bobbarge,I had to miss my second round of RTX as it was due in the peak of the first lockdown and I was shielding strictly.

Luckily I managed to get another round in October and it was absolutely fine, hospital had very strict protocols in place for covid/social distancing etc.

I was told I’d ideally have to shield for the following six months but tbh my habits haven’t changed particularly - I only go out if really necessary and wear mask/wash hands religiously.

I guess each hospital is going to have their own stance on this but if I were you I’d try and push for the infusion if you’re not coping - apart from the pain, you could be sustaining joint damage all the time your RA is not under control.

In the first lockdown understandably they wanted as few patients as possible on the premises and many rheumatology staff were all hands on deck elsewhere in the hospital on covid wards.

But that first panic has passed, the hospitals are getting much nearer to service as usual in rheumatology, but of course are now playing catch-up.

I hope you get sorted soon and if you can’t for whatever reason have RTX perhaps they could at least give you a steroid shot in the bum to tide you over?

Bobbarge profile image
Bobbarge in reply to MissMinto

Thank you very much, your right everyone is beginning to calm down a bit, very good advice , let’s hope we can get back to some sort of normality, onwards and upwards.

I waited from October 2019 to September 2020 for Rtx due to the pandemic and then when the case numbers went down to zero early September 2020, my nurse booked me in. We live in an area where cases are never really going down enough. So I’m waiting the required month now after my second vaccine to have my next Rtx. I thought most hospitals’ rheumy departments in the U.K. were back with Rtx.

Thank you very much, I need to go back and speak to my consultant, good luck to you, let’s hope this covid backs off soon

Thank you and hope you can get in soon for your next one. 🙏🏻

I started Rituximab in Dec 2019. Had second round July-August 2020.

Third round Feb 2021.

Really kicked in last summer except for L wrist and knuckles. Got three steroid jabs into knuckles in Dec.

Bobbarge profile image
Bobbarge in reply to charisma

Thanks for your reply I need to go back to my consultant and try again, many thanks

I had two infusions last November. That was about my 9th. I've had to wait to have the covid vaccine, due to have it next week, which will be 5 months from the infusions. Good luck.

Bobbarge profile image
Bobbarge in reply to sunnyweek

Good to hear people are still getting the infusions I’m going to speak to my consultant again many thanks

sunnyweek profile image
sunnyweek in reply to Bobbarge

If it helps your armoury, having read your responses, my hospital (Notts) told me they had done infusions all the way through the pandemic, socially distanced of course so a bit longer to wait, but she said people needed them, especially people needing infusions monthly for other conditions. I think it can depend where the infusions are done, ours are done in a treatment centre next to the main hospital. I'm hoping you get a positive reply very soon.

I had one set of Rituximab infusions last July and have another set booked in about 4 weeks time.

Bobbarge profile image
Bobbarge in reply to JulezH

Thanks for your reply my consultant is against me getting an infusion siting covid as the enemy, I’m of the opinion that I understand the risks but hearing others are still getting it adds armour to my argument.

Yes I have two rounds of Rituximab since the start of the pandemic. I had 2 lots (two weeks apart) in May last year (delayed by a month, I was originally booked in for mid-April), I had another two lots in November/December. I have just received my appointment with the Biologic Nurse for May to organise my next round in June.

However, I am in my mid-forties with no other health conditions and I don't take steroids regularly. As such I have been told I don't need to shield, but just to adhere to social distancing guidance and be careful.

Bobbarge profile image
Bobbarge in reply to bpeal1

Thank you very much for replying, my very accomplished consultant told me to my face, no no no ritixumab cannot be given, don’t you realise we’re in the middle of a pandemic, I’ve lost close friends to covid, under no circumstances can I allow you to come in for an infusion! This was November 2020, usually after a year I re qualify but I was in good shape then and told him I was beginning to turn but he was insistentSo I’m now experiencing full on flares as I predicted and no doubt will end up on steroids to be able to function, here I go again fighting for treatment!!!

bpeal1 profile image
bpeal1 in reply to Bobbarge

That’s really tough. Is there another consultant at your hospital you could ask to see? Try calling the NRAS helpline, they may be able to advise you.

am in the middle of my second round of rutiximab it all depends on the risk factors so there have been individuals assessments done.

some have stopped some are getting it and some have been spaced out further it will put u in the very high risk category in terms shielding

The world is upside down, covid is dangerous but so is the medication we all endure, I’m aware of the risks, ritixumab is my remedy and the alternative is rapid deterioration.Let’s all hope it all ends quickly, thanks for your reply

My ruematogist told me there should be a 5 week wait after COVID injections before you get a Rituxin infusion.

Moomin8 profile image
Moomin8 in reply to liveinwoods

I wonder why there's different advice from so many different people 🤔

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