I've given consent to try Rituximab after Prednisolone isn't getting ra under control. I've learnt will be 4/5 hour infusion at hospital. And clothing tip, and food tips thanks peeps. Question is. Can I go to and from hospital by public transport or do I have to have someone collect me?
Thanks everyone ☺️
Elastic waisted trousers/ joggers or leggings are useful should you need to go to the loo with the cannula in. I tend to feel cold so it's a good idea to ask for a blanket. The unit I attend provides tea/coffee/water and a sandwich lunch. It's also a good idea to drink a lot of water as it may help prevent a headache. There's no reason not to use public transport but there is usually patient transport available. Some people drive themselves to and from. I hope this helps.
Of course it depends how you feel, but I’m a real,oldie & over the last 8 years I have driven myself there & back no problem.
But if you mean aiming to catch a bus/train at a certain time that could be a problem….because until you have had your first infusion nobody will know how long it will take…my first infusion took 7hrs & that is not unusual.
I did ask before my first infusion & was told there was no reason not to drive, so public transport should be fine….but it might be wise for the first infusion if you would be relying on a transport timetable to have someone on standby to pick you up.
Thanks so much for info. It's the big unknown for me again! xx
Rtx really is as good as we all say it is, the only thing you might experience is a bit of a flushed feeling ....my ears turned bright red & I felt warm.
When something like that happens the Bio nurse slows down the infusion & carries on as normal.
I was then, 75 & as I say drove myself there & back quite happily.Do let us know how you get on…when is the big day?
Many thanks. I am 69. MDT meeting on Wednesday will discuss whether I am a candidate for the treatment. So fingers crossed x
Can you let us know how you go? I am being put forward for this drug. The only thing I'm worried about is the sitting in one place for hours. I have alot of pain and neuropathy. I'm presuming you can stretch your legs and maybe have a snooze lol. Good luck btw
it might depend how you react to piriton - you get a IV chlorphenamine and it makes me very sleepy. Might not have that affect on others, but I’m often drowsy for a few days after treatment because of it (and likely just the cocktail of stuff along with the infusion). You will also get relatively high dose of methylprednisolone before the infusion so best to stay off sugary foods as snacks.
Hope it works for you!
Also to note you’ll be more immune suppressed on rituximab than Prednisolone so be careful with respiratory illnesses. You should also be given prophylactic Co-trimoxazole.
My Rheumy or immunologist don’t prescribe a prophylactic when first on Rtx. The protocol is they wait until you are hypogamma/igG <6 … unless you have any extreme lung issues and they felt you needed to go to that situation much sooner re prophylactic antibiotics. For some people on Rtx their immunoglobulins aren’t as affected as others can be from the start of having Rtx. For some it’s different, depending on comorbidities, but often your igG decreases over repeated Rtx’s but not always, and there are some people on here who have had their immunoglobulins decrease very fast.
I was told by a senior immunologist he would not prescribe prophylactics until he was sure the igG and igM were showing a definite pattern of under threshold. They can and do fluctuate and I know many people don’t have an issue but we hear of the ones that do. I wish SALI the best for the upcoming infusion and focus on the benefits it will give. 🩷 Careful monitoring by the rheumy and. blood tests will give reassurance.
Hope your RA is steady, Grizzly. 🩷
Thanks for info. The MDT is Wednesday and I will have to wait and see if they approve treatment. Biggest concern is that I was diagnosed with lung cancer last January, all clear now. My only option now is Rituximab xx
They wouldn’t be giving you it if they didn’t feel it was the right thing to help you, so have confidence in them and they’ll keep a close eye in you. Sending hugs and hope all goes well. 🩷
Thanks. It's a nightmare being back to square one after everything I've been through already xx
Hope you can soon get started on it and feel improvement. 🙏🩷
I think that only applies if you have a history of pulmonary weakness. …Rtx doesn’t cause it….it only makes those with the susceptibility likely to get infections.
Pre Rtx I had never even had a cough,& in 8 years on Rtx ..apart from a niggly dry cough when I had Covid,I have never developed an infection. I also never take Pred …it doesn’t suit me, except the 25% of the normal dose of Methylprednisolone when I have an infusion.
So you see - everyone is very different in their reaction.
That is interesting you only took 25% of the Methylprednisolone with your infusion. I had the full 100% and then couldn’t sleep for weeks after (it does not agree with me) I asked at the second infusion if I could miss it out but they said no and gave me 50%. I’m still waiting for an improvement after having my second infusion on March 5th. I had no side effects except from the Methylprednisolone which also puts my blood pressure up!
What you have with your Rtx infusion is of course decided by your prescribing Consultant Physician …..& if you look on the NICE site that physician can change it to suit the patient…luckily my rheumy does that. When first diagnosed & I was given Pred…Oddly enough I never found it kept me awake.
However it or in fact any steroids don’t suit me….& luckily I don’t suffer any ill effects or infections….think my daily glass of Red 🍷keeps me healthy!
They say a glass of red wine is good for you, it’s a shame I don’t particularly like it! I have a friend who is 95 who has a whisky everyday and has done so for years.
I didn’t get to see my consultant prior to the Rtx infusion. It was decided the Hyrimoz had not worked and after their team meeting it was decided to put me on Rtx, initially the registrar I saw thought Rinvoq would be best but that was changed at the meeting because I was 64!
In the late 1950’s we gave recuperating patients Guinness, & tbh, I think only financial restraints stopped that practice!
I’ve been on Rituximab for 11 years and never been given prophylaxis antibiotics, and never heard of anyone else getting them either. Don’t think it’s standard practice.
It isn’t standard practice no, but it was a much needed alternative for me to take 3 lower dose Azithromycin antibiotic capsules Mon Wed Fri than having a full 2 weeks of Doxycycline antibiotic capsules. every other month (had to do that 28 times over 4 years of as I had developed chronic bronchitis and sometimes pneumonia as a result of Rtx lowering my igG & igM, which are needed at higher levels than the levels I had to fight off infections.) I had hypogamma for 4 years before coming off Rtx, but didn’t qualify for IVIG as my igG wasn’t <3 but was still bad enough to cause me all the bronchial madness. The prophylactic antibiotics hold back my bronchial issues and Azith also lowers inflammation so works well for many on the chest.. I am able to take this smaller dose of antibiotic prophylaxis alongside Abatacept and Mtx which I checked.
Sorry I should have made it clearer. I was replying to Grizzly-bear who told the original poster that everyone on Rituximab should be given prophylactic antibiotics. What I meant was I had not heard of anyone routinely being given prophylactic antibiotics unless there was a specific reason (ie. a known history of infections or weakness).
What is prophylactic Co-trimoxazole?
After your first infusion your rheumy can adjust all the add ons. I only have 25% of the full methylpred dose, and a less drowsy making antihistamine is also available. The Bio nurses sort that out.
I have never felt up to driving or taking public transport after rituximab . I can feel week and sometimes s bit dizzy. It might be worth getting a lift home after the first infusion just incase. It can take me 2-3 days to recover. Obviously every one’s different so you might feel just fine. I hope all goes well for you you find it helps 🤗
Thanks for sharing x
I was away with the fairies 😝 as soon as the Piriton tablet kicked in and I’d be woozy for the rest of the day once I’d had antihistamine so no way would I have driven. I got my hubby to collect me.
Definitely alot safer!!!!
Most definitely, but I don’t go for RA hospital infusions now as I’m off Rtx. I was always last out as the med came from the main hospital 10 miles and they didn’t drive over with it until 1130 most times before I started the actual Rtx. Frustrating, but nothing my local hospital rheumy team could do. So at least traffic had gone by the time my OH arrived. I’d have not been able to even do the short drive home after the Piriton slumbers!
I was the same ! Could be a while before get the drip up and then I get it at a slow rate as faster rate didn’t agree. I download a programme or just read, nice comfortable reclining chair .
Hope you’re keeping well at the minute 😁
My nurse tried to preempt this late delivery of Rtx by doing the Piriton and IV steroid before Rtx arrived …. It backfired twice as once the Rtx never arrived and another time a biosimilar arrived. (At least my joints felt good as in 2 weeks I’d had 3 IV steroids!!) I wasn’t too keen on going home woozy and returning the next day. My rheumy blew a fuse and they made sure they did it right after then. Generally in the last 3 years of Rtx, it was one day of 365 for me to go do the infusion so wasn’t a problem. You get to know your nursing team very well when you’re there all day and you meet some great people there too .. well if you can keep your eyes open after Piriton! 😴
I’m now on Abatacept thank you, and it’s doing very well 🙏 Still recovering my immune post Rtx but it’s slowly happening. Hope all is steady and good with you. 🩷
I try and stay awake after periton incase I snore 😂.
Im not too bad at moment though I think my joints are getting more painful again. Rheumy wants me to to do 9 months this time, not sure if i will make it ☹️
I hope you last 🙏 but if you need it sooner let them know.
I could never fight the Piriton slumbers 🤣 but my nurse said I never snored.
😁
😂
The anti-histamine which is given with the Rituximab makes me feel very sleepy/dopey. I certain wouldn’t attempt to drive home afterwards but I probably would be ok to go by bus /train if that was an option.
As for clothing, just wear something comfy, you will be sitting around for several hours.
At our hospital we are given plenty of tea/coffee and sandwiches, crisps fruit & biscuits for lunch. Drink plenty of water during the day as it really helps to lessen the ‘hangover’ the next day. It’s tempting to limit how much you drink as going to loo is slightly trickier when hooked up the IV pump but don’t fall into that trap. Good luck- I hope it works well for you.
Rituximab changed my life, I've had RA for a long time and tried a lot of stuff. Last year was probably my worst year of my RA life I spent 8 months in bed, lost 2 stone and a toe, I had to cut my hair because I couldn't brush it, I couldn't hold my, at the time, 2 year old and she'd often ask when I could pick her up again, which was the hardest thing however, had that not happened RTX wouldn't have happened. I started mine in August and when I say it's a life saver it's an understatement. I can hold my daughter again, I'm me again! I started to feel better quite quickly and I think it's because I was literally at rock bottom, I had my 2nd cycle in Feb and March I'm definitely back to myself.
Your first "round" could take longer that 4/5 hours, I was there for 6. Take a book, snacks, headphones whatever you use to pass the time. Wear loose clothing, especially where your cannula will go.
Rtx doesn't always work for everyone and everyone I had spoken to before starting said great things, but I have met a few that didn't get the same outcome.
And as someone else stated you will be more immune suppressed, a cold can turn into a chest infection in a day, it did for me on mother's day, so be more mind full of washing hands and tell people to keep away if sick.
I hope this does for you what it has for us all 💜
Thank you so much for replying. I am so glad you are now in such a good place. This is how it was for me when I was finally put on biologicals, amazing. I am hoping for good results, but it's all got a bit scary for me again. Wishing you well xx
I hear you, I was petrified before choosing RTX.. Jan last year I was given 2 options, RTX or Abatacept.. I went for Abatacept first and it attacked my heart and lungs.RTX was my last option and I pray it works forever 🙏🏼
I chose Abatacept first because my old consultant thought it was a good idea to start with the side effects of RTX and then say how good it was so it put me off.
If you have any reactions the nurses are constantly checking on you and you get give pre-meds.
The Steroids and Antihistamines make me so tired so I just sleep through it.
💜
I’m sorry you’ve had some awful times 🥲 but glad to hear you’ve got your life back on Rtx. 🩷
Thank you, the damage that last year made is a constant reminder but its another new normal again and I'm coping ❤️
It is awful how we can be taken so low with RA but wonderful how we can return to enjoying life and feeling relatively well. 🩷
Hi I know when I was on Rituximab I was really sleepy during & after the infusion. I wouldn’t have been able to drive home & hubby always came for me. Having said that I’m a lightweight when it comes to meds. Also it depends on how far away you live from the hospital. If only a short distance you would manage ok. It’s best to ask the Rheumy nurse if possible. Good luck
That’s the same as me. It’s a hard one to call especially if someone has to drive that twice to drop & collect you. x
I started on rituximab when I was 66, I had to be taken in an ambulance and using a wheelchair. I am now 69 and have my life back. I drive myself to and back from my infusion and can walk with no aids. I am comfortable in a reclining chair and there is tv in the unit. They offer me tea throughout the infusion and serve soup and sandwiches. I take my tablet and watch something on it.It has been a miracle medicine for me. I know we are all different I do hope this medicine works as good for you as it does for me. Good luck x
Thanks so much xx
So happy for you & happy to say Rituximab has given me my normal pain free life back too… long May it last 🤞🏼Xx
I'm also due to start this 5th May,great tips ,,will know what to take with me ,and what to expect,this forum is fab,all like minded people .many thanks 😊
I took Rituxin before Covid hit us. As you know, it depletes the B cells and as a result, I created no antibodies after the Covid shot, despite waiting 4 months after my last Rituxin infusion. I was very sick when I got Covid because I have no antibodies. The Paxlovid saved me from going into the hospital but I did develop an infection that required a strong antibiotics.
Just wanted to make you aware. Your body may deal with Rituxin in a different way and you may have a stronger immune system. I wish you luck and hope the drug works for you.
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