Rituximab IV

[Bagpuss2021]

I am starting Rituximab IV next week and wondered if anyone in the community has had this before. Over this month I have had so much IV steroids the side effects has been terrible. This infusion takes all day, so in hospital again for 6 to 8 hours. Just wanted to ask if anyone has had this medication and what their experiences have been. thanks in advance.

[KittyJ]

if you put that into the search box and filter for NRAS then all the posts about it will come up. There are lots of people here on it so there should be quite a few posts 😊

[Jackie1947]

I had a few rounds but suddenly it didn't suit me. Been on Benipali ever since.

[Bagpuss2021 in reply to Jackie1947]

I think that is what seems to happen with everyone

[AgedCrone]

I have been on Rtx for 6 years & it’s the best treatment I have had in over 20 years. There are lots on here on it. It’s iso convenient, just a couple of visits to have it in a year and if you’re lucky you won’t need any other drugs.

It will probably only be your first infusion that lasts around 7 hrs..,whilst your nurse gauges the speed you can take the infusion …most of us get it down to 4/5 hrs.

The time goes very quickly because you have initially 15 minutes Obs then 30 minutes so make sure you take a good book or your iPad to pass the time.

Also….take a sweater because you tend to feel quite cold when you’re having infusion and wear some sort of garment you can go to the loo easily. It’s not easy zipping up trousers when you’re attached to a drip!

Good Luck..hope it suits you & that it works for you.

[Bagpuss2021 in reply to AgedCrone]

thanks, that's good advice. did you get any side effects after the infusion, and how quickly did it work for you.?

[AgedCrone in reply to Bagpuss2021]

I

During my first infusion I did get a bit hot & bothered, but as soon as it was slowed down it was full steam ahead.

I haven’t had any bad effects at all….so don’t expect to have any…..if you start any medication expecting side effects you have read about, it’s quite likely will get them!I haven’t had as much as a cold.

I started Rtx in 2016 & I honestly don’t remember how long it took to kick in…but not long…& I haven’t had any infections …so if you do develop anything unusual……don’t immediately blame the infusion….unless it’s unbearable wait & see - don’t miss out on a great drug when it’s only a sniffle.

[Bagpuss2021 in reply to AgedCrone]

thanks

[Amnesiac3637]

I was on Rituximab some years ago and although it took about six months to work for me which was really slow compared to a lot of the newer drugs on offer, it worked well and I can’t remember having any side effects to speak of.

Unfortunately, it messed up my bloods after three years and I had to come off it. The infusions were fine; yes, a bit of a pain going into hospital and having to be infused for some hours but as Aged Crone says, it passes, take a book or iPad, eat the snacks and relax! Good luck, hope it works well for you.

[Bagpuss2021 in reply to Amnesiac3637]

thanks. fingers crossed all will be OK.

[Lolabridge]

Rituximab was a total game changer for me after a long struggle to get my RA under control.

I really hope it works as well for you 🤞🏻

[Bagpuss2021 in reply to Lolabridge]

thanks. I hoping for the same

[Bagpuss2021 in reply to Lolabridge]

Hi, can you tell me if you had any side effects, and how long it took to start working for you. I understand that if it works its a good medication to have. I am a little apprehensive about any side effects, as I've been on IV steroids and the side effects are terrible.

[Lolabridge in reply to Bagpuss2021]

I sometimes have a slight headache during the infusion and next day. Other than that none.

Drink plenty of water during the infusion and have something to read or download something to watch/listen to on your phone.

You will be monitored by nurse during the infusion and regular obs done so please don’t worry.

I take my own packed lunch as I’m not keen on the one the hospital offers! I recommend you wear comfy clothes and take a cardigan or wrap as you may feel cold sitting for a while.

It can take a few weeks for the drug to take full effect but when it does I hope you will be pleasantly surprised how good you feel! 🤞🏻

[Bagpuss2021 in reply to Lolabridge]

thanks. that's good advice

[AgedCrone]

Haveou asked to try RTX on its own?

After 7 years on Methotrexate I had nasty cns side effects …..so I don’t have it alongside Rtx. So far ..,after 6 years.it has worked really well.

[3LittleBirds2 in reply to AgedCrone]

I have never had Methotrexate with Rituxumab, it's always been a stand alone med for me. I'm convinced it was when they changed me from Mabthera to Truxima, but who knows.

[Juliesb]

Hi, I'm about to have my 3rd set of infusions and it's definitely the best drug I've taken for my RA. First time round it took around 9.5 hours but only because I reacted to the speed it was given, it was slowed right down and then no issues it now takes around 4/5 hours and only have it yearly with no side effects. Good luck.

[Bagpuss2021 in reply to Juliesb]

my first lot so told to expect 6-8 hours.

[janmary]

I had my first infusion in November - it took weeks to have an effect but I had no side effects - the nurses who run the infusion suites are very experienced and efficient.

I m now due for another infusion and feel I need it - hopefully it will work quicker this time. I did get COVID for the first time in January but very mildly, no other infections🤞

Good luck!

[Bagpuss2021 in reply to janmary]

thanks, you too

[Gnarli]

My first infusion is next week too! No, I'm not looking forward to being stuck in the hospital, which is 30 miles from home, and with which I have an unhappy history. However, if it means no daily pills or weekly/two weekly injections I'll take that. I will take a 'busy bag' of reading matter, snacks, a blanket and a packed lunch (yes I know they provide a sandwich but I'm picky), wear some elasticated waist trousers and job's a good 'un. I wish you an untroubled infusion and an amazing improvement in your condition.

[Bagpuss2021 in reply to Gnarli]

thanks. I hope everything goes well for you too.

[StormySeas]

I'm on RTX. I have an infusion approximately once a year.

It's been very successful. Lots of good advice above about what to expect in hospital and how to pass the time. The staff monitor you very closely indeed and in my experience take good care of you.

One useful tip is to take a pic of the infusion bag. They'll give you a steroid drip first, but if you take a photo of the RTX infusion you'll have a record of exactly what you've received - brand name and dose. It's handy to know for future infusions. Hope it goes well for you

[Bagpuss2021 in reply to StormySeas]

thanks that's really good advice.

[Jumbo2012]

Been on rituximab for ten years no side effects, no longer need steroids, the fittest I've been for years,go for it

[Mich1701]

I've been asked if I want to go on that as rheumy thinks the Imraldi isn't working. She's asked me to think about it. After the stresses of yet another cock up by Sciencus I'm seriously thinking I may say yes because at least I wouldn't have to deal with them anymore.

[Bagpuss2021 in reply to Mich1701]

That's a good reason to change, they drove me mad with their idiot delivery/contact centre people. This really was the last chance saloon for me, as not much other than methotrexate worked for me, but had to stop taking due to injection site issues. I have been in such a bad place in the last few months, that I am now looking forward to getting the infusion started, and my life back on track.

[Mich1701 in reply to Bagpuss2021]

Good luck. Keep us posted on how you get on with it.

[Kags1068]

Hi Bagpuss

I'm sorry you've been having such tough time. I had my first 2 infusions of RTX in March. I'm now about 7.5 weeks post second infusion. The infusions themselves were absolutely fine. My biggest worry was vein access as I have crap veins, but the nurse got it first go on infusion 1 and second attempt on infusion 2. Very impressed. They check a water sample first to make sure there's no infections, and check your blood pressure etc. If all ok, then you have the steroid infusion first which lasts about an hour. They will probably give you an anti-histamine tablet to take at some point too. Then the main event. The RTX is titrated very slowly the first time, but was speeded up ever so slightly as time went on. About an hour in, I had a mildly scratchy throat and felt a bit hot for about 10 minutes (not enough to mention), then I was fine. The first time I was there nearly 7 hours, but there was a delay with the RTX coming from pharmacy. During that first evening, I had a moderate sinus- type headache, but by next morning it had completely gone. After about 48 hours I felt more tired than normal but that went after a couple of days. Nothing else. The second infusion went smoothly too. They speeded up the RTX and I was perfectly fine - nothing. No headache later in the evening either. Again, the only thing was a bit of extra tiredness after a couple of days. No side effects since.

As I said, it's now 7.5 weeks, and (I'm whispering this as I don't want to jinx anythjng😉🤫), but I think I'm starting to see some slow, gradual improvement. I'm 54 and have had severe Juvenile RA for 40 years, so lots of damage to joints and numerous ops. As such, I got the "don't expect any miracles, as you know it's too advanced for that" talk from my Consultant. Evenso, I'm grateful for any glimmer of improvement. My joints are a bit more comfortable, I don't feel quite so tired, I feel a bit stronger, and don't have that vague sense of feeling "dreadful" eventhough you can't necessarily say why! I'm sure you know what I mean.

Finally, one of the nurses in the unit told me that if you are going to have a reaction to the infusion, it would usually happen in the first 15 minutes or so. So, after that it would be very unlikely.

Hope this helps and good luck😊xx

[Bagpuss2021 in reply to Kags1068]

wow. that's is brilliant, has put my mind at rest. thank you so much.

[Kags1068 in reply to Bagpuss2021]

You're very welcome. Hope you're experience is as positive😊

[Neonkittie17]

Once Rtx starts to work well you won’t or shouldn’t need to keep having steroid shots into your joints or generally, but the Rtx infusion is usually proceeded by an IV steroid which lasts about 30 mins before each Rtx. Rtx should give you a lot of freedom in many ways. Won’t elaborate on here as you’ll find out soon hopefully how much more you can move and feel less pain. Good luck Bagpuss. 💗

[Bagpuss2021 in reply to Neonkittie17]

thanks

[Neonkittie17 in reply to Bagpuss2021]

💗

[Helen-NRAS Moderator]

Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. This publication may be of help to you nras.org.uk/product/medicin.... Kind regards.

[Bagpuss2021 in reply to Helen-NRAS]

thanks I think I might call, I think it could be very helpful.

[MyCLLJourney]

I had rituximab in 2012 and in 2021. In 2012, I had my first 3 infusions without any problems so they told me they were going to ramp it up next time. Still no issues. They did it every 6 weeks. About half way thru my 6 weeks after the ramp up, I started developing severe myalgia. I thought I would bring it up with my oncologist at my next appointment. He decided not to do my next treatment and see what happened. I waited another 6 weeks and the myalgia was completely gone. He said it was a reaction to rituximab. My chart listed that I should not have it because of allergic reaction. Then in 2021, I was admitted for symptoms that ended up being meningo-encephalitis. Rituximab is one of the treatments for it. He saw that I had it listed as allergic, but it was administered anyway. I had no problems with it. And, its results were immediate both for my CLL and for the encephalitis. I also started having issues with dairy when they had started rituximab back in 2012...I dont know if it was related to the rituximab or not, but I still can't have any dairy.

[MyCLLJourney]

I had rituximab in 2012 and in 2021. In 2012, I had my first 3 infusions without any problems so they told me they were going to ramp it up next time. Still no issues. They did it every 6 weeks. About half way thru my 6 weeks after the ramp up, I started developing severe myalgia. I thought I would bring it up with my oncologist at my next appointment. He decided not to do my next treatment and see what happened. I waited another 6 weeks and the myalgia was completely gone. He said it was a reaction to rituximab. My chart listed that I should not have it because of allergic reaction. Then in 2021, I was admitted for symptoms that ended up being meningo-encephalitis. Rituximab is one of the treatments for it. He saw that I had it listed as allergic, but it was administered anyway. I had no problems with it. And, its results were immediate both for my CLL and for the encephalitis. I also started having issues with dairy when they had started rituximab back in 2012...I dont know if it was related to the rituximab or not, but I still can't have any dairy.