Rituximab

[Lorrayne]

Hi everyone, on Wednesday I have my first Rituximab infusion, not sure what to expect, how my body is likely to respond, so any advice or comments would be greatly appreciated.

Thankyou

[KittyJ]

If you put rituximab into the search box and filter for NRAS then all the past posts about it will come up. Good luck and 🤞🏻

[AgedCrone]

You will most likely just have a very pleasant day hooked up to your new drug……& your body will feel normal.The only mild symptom maybe you feel a bit hot & itchy…but the nurses are there all the time….so just tell them & they will slow down the infusion…once they have the right flow speed …you will be fine.

Do take something to read…..my first infusion took nearly 7 hours…so you need something to keep you occupied. I always feel cold..,so have a cardigan or a throw to keep warm….& most important…wear pull on trousers…trying to navigate trousers with a zip when you wheel your drip to the loo is something to avoid!

Good Luck….but don’t expect miracles overnight…..Rtx can take its time for you to feel the benefit,…..I started it in 2016….& it has suited me very well.

[Lorrayne in reply to AgedCrone]

Thank you so much for your comments you have made me feel more confident, going on Wed, thanks for the practical tips too, I will be going dressed in my pull on M&S specials, usually reserved for scans, my kindle and a few woolies I too feel the cold x

[madme1 in reply to Lorrayne]

We are all different but I can relate to feeling hot itchy patches on my cheeks under my eyes. These can be soothed with a cool moisturiser or water spray. Yes take something to read and a drink. You might feel like someone has recharged your batteries, finally and want yo dash around d but pace yourself. Best wishes.

[Birthdaygirl in reply to AgedCrone]

About to change to Rituximab and have started a list of questions. Thanks for sharing your helpful and practical advice. It all helps. BG

[AgedCrone in reply to Birthdaygirl]

It really is the least intrusive medication I have been on…just a couple of infusions & you are off free for 6 months! I have graduated to 8 months…but in fact my last infusion did not seem to kick in…but that is the first hiccup I have had in 6 years.

Of course my Rheumatologist won’t comment ….but I am convinced it’s something to do with the Covid vaccinations which I had really nasty reactions to…I’m just waiting to see how the next infusion is.

[Birthdaygirl in reply to AgedCrone]

I also like the thought of syringe free medication not that it was ever a bother. After 7 years on Enbrel it unexpectedly failed after covid vacs. First vac was ok but went down hill after that. My Consultant said that time will tell! In the meantime I feel back to square one and desperate for something to work. Hope your next infusion is a success. BG

[AgedCrone in reply to Birthdaygirl]

Thank you …So do I hope it goes back to normal…my hearing has gone rapidly downhill & I have developed sporadic tinnitus which so far is not too bad…but I keep hearing knocking sounds & being in a new house I keep wondering where they arev coming from…lthen I realise…it’s my own ears!I’m seeing my rheumy soon so will try to get some info then….but I expect he will still be on the fence.

[Twitty999 in reply to AgedCrone]

You’ve described it all perfectly! & Rituximab has given me my life back.. long may it continue 🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼☀️☀️

[Birthdaygirl]

Hi LorrayneThanks for posting this as I am changing to RTX within the next month hopefully and as it’s so different from Enbrel and Imraldi I am also full of questions. This forum is invaluable. Really wish you well and success. BG

[bpeal1]

I really enjoy my Rituximab days. A chance to sit with your feet up all day whilst other people bring you cups of tea or coffee. I always take my latest sewing or chrochet project and my kindle.

The next day I always feel a bit rubbish, like I’ve got a hangover so always make sure that is a quiet day. Drinking plenty of water during and after the infusion helps to prevent this I find.

Good luck.

[Salsalady]

I had my first treatment in February, packed a bag of goodies & things to keep me busy for the day, headphones & puzzles. The treatment was pretty stress free the only issues was finding a vein!! The nurses were lovely & constantly keep an eye 👁 on you. I Was a bit nauseous for about a week, but so far so good, feeling a bit better, doing more than I could before, my next is in August. I did watch some Utube videos giving me some ideas what to expect.

[LuckyMB78]

I found the infusion days very relaxing! Definitely take a book or something to keep you occupied. I didn’t experience any uncomfortable side effects although the antihistamine they give at the beginning made me drop off to sleep for a few hours! All in all it was a good experience, hope it works for you 😊

[Juliesb]

Hi. I had my first last July. I would allow quite a while on your first go. I was there for about 8 hours. It took 2 hours to get a vein and then they started. It was fine to begin with then they upped the speed twice, on the 2nd time I started to react, became itchy and throat started to tickle so they stopped for a while then started up again. This time it was fine but just had to keep stopping and starting which is why it took so long. 2 weeks later I had my 2nd one and was in and out in 3 hours. Best meds I've had. Kept it at bay for months. I've got my next in 3 weeks time. I would definitely recommend taking a book/music/cards/knitting etc to keep you occupied but it is definitely worth it. Also I used the time having it done as a chill time away from the housework/children/husband. Good luck. X

[Angjoplin]

I would add a warning about the day after. If your working take the day off and don't drive. The infusion day was fine. The next day I was out of it.

[Evie3]

They always start it slowly but administer anti histamine and steroid first. If u r on BP tablets dont take on the morning. One lady had a slight rash appear so they stopped it for a bit….Dr popped in but they restarted and she was fine. Expect to b there for about 6 hrs. Well worth it tho…I was in a wheelchair if we went out and now out and about walking with manageable pain. Good luck

[cathie in reply to Evie3]

that steroid always lasts til the evening for me and I'm quite high!

[Evie3 in reply to cathie]

Certainly makes u feel good 😉

[Lolabridge in reply to cathie]

Yes me too!

[Lolabridge in reply to cathie]

Getting my second infusion on Thursday and looking forward to feeling like the Duracell bunny all Friday. ⚡️⚡️🤪

[Travelodge]

I had my first infusion yesterday. Apart from a slight headache and feeling a bit tired I'm all ok today. I had 2 paracetamol and an anti sickness when I arrived. They then set up the drip and put a small steroid bag on, then a flush through bag, then ritiximub then a short flush through bag and it was all done. I went in at 9 and was out about 3.45. Bit longer in there when it's your first few. Take a drink and something to read or do.

[Lorrayne]

A big thank you to everyone who replied, I have taken all comments on board and feel much better equipped to deal with this tomorrow and afterwards, I’ll let you know if you were telling me porkies !!!! Take care of yourselves xx

[Birthdaygirl]

All the best. Be thinking of you and look forward to your update. BG

[Zara0123]

Hi Lorrayne, this post has really helped me too. I've only taken Methotrexate for a year and a half for my RA. I've had to stop taking it after I ended up in hospital with pneumonia in February. I'm on prednisolone at the moment and might end up having Rituximab infusions if my Rheumatologist feels it's not safe for me to go back on Methotrexate as the CT scan showed damage to my lungs which may be the cause of taking Methotrexate although its not certain. I was really worried about starting Rituximab but after all the information and advice given here I feel relieved that it will be ok if I need to.Good luck for tomorrow. I hope everything goes well for you 💕

[Lorrayne]

Hi Zara thank you, I hope it works as I feel this is last chance for me, I’ve had RA 32 years, Methotrexate since 2002, have tried 2 different Biologics in the last two years but have had to stop as they have caused other probs for me, I have lung damage but still take Metho ? I wonder if the Rituximab works then will I be able to stop Methotrexate?? no one has said, although I still had to take it alongside the Biologics as apparently it works on a different part of the immune system, so many questions!!! I wish you well Zara, I’ll post later how I got on x

[Debs__]

Hi Lorrayne,I had my first Rituximab infusion last week for a rare condition called Dermatomyositis.

I’ll be honest - I was absolutely terrified of having this after reading the side effects etc.

I’ve previously had IVIG infusions that went well but generally considered safer.

My infusion lasted around 8 hours overall (with the premeds etc) and I only had a very mild headache, itchy throat and ears which subsided after a little while. I was very tired afterwards but couldn’t sleep (never can after high dose steroids) but the next day I rested and slept a lot.

I’ve been feeling pretty tired over the past few days but it’s not debilitating - I’m still able to get stuff done but rest in the afternoons.

I go back for my second next week and I’m much less nervous (although, since we’re now allowed company, I will be taking my Mum!).

Time goes much quicker than you’d expect.

Best of luck to you, lovely.

[Lorrayne in reply to Debs__]

Aww thanks for your msg I hope you get on well next time too and everything works out for you, I’d be taking my mum as well x

[Foofsie]

Hey Lorrayne!I hope your first infusion went well.

I have been on RTX since 2013 and have luckily been coping on once yearly infusions which only started being less effective in the last couple of years.

The actual process is pretty easy, unless, like me you have one singular venous access, which makes the preparation process super stressful. I am due my next first session of two on 6 June and cant wait! I literally liken it to feeling like a Duracell Bunny running out of charge and I can not wait to be recharged.

Sit with it a little as it does take a while to kick in irrespective of what other people say, but personally, it has been a life saver after 37 years of RA and multilpe joint replacement surgeries.

You will be great! Gx

[Lorrayne in reply to Foofsie]

Morning foofsie thank you for your reply, I’m so glad things have worked out for you with Rituximab, sorry to hear of joint replacement surgeries but I sincerely hope they have made life more manageable for you. I know the feeling of the Duracell bunny, it was about 30 years ago the first time I had a massive dose of steroids, it was like someone switched the lights on I was buzzing around full of life no pain, long time ago but I still remember and would like to think Rituximab will have the same effect. Sadly after being sent for a chest X-ray on arrival yesterday the team have found an area of fluid in one lung and so I am now awaiting a CT scan and for them to draw fluid from my lung to test what it is and why it’s there. I hope Rituximab continues to work for you and wish you well in June x

[Foofsie in reply to Lorrayne]

Hey LorrayneI am so sorry to hear about the issue with your lung and I hope it turns out to be nothing sinister and you are able to get on with getting your Rutuximab infusion soon.

Take care of yourself and best of luck with your test. It's a lot to put up with for sure but we keep keeping on, as that's the only way forward, I feel.

Gx

[Lorrayne in reply to Foofsie]

Thank you x

[Birthdaygirl]

Morning LorrayneAfter all that planning for the infusion what a disappointment. Feel for you. Hope you can get the lung test soon. Take care

BG

[Lorrayne in reply to Birthdaygirl]

Thank you x