Hello my RA nurse suggested I ask on here if there is anyone who has been on this drug who could give me some information about their experience. I have tried all the other usual drugs but not had much benefit currently on Benepali for the past year but am in pain every day, perhaps I expected too much.
I am needle phobic and dread the idea of having a drip stuck in my arm. I am one of those with pale skin and deep veins so they never find it easy to extract my blood. i have had lots of bad experiences. I came out of the Edward Jenner Clinic last week with a lump and two puncture wounds, subsequent bruising only just fading. I am assuming finding a spot for the line wont be straightforward, so I am very nervous. Shaking in my boots is how I feel.
That is not my only concern I fear what will it do to me. Please believe me when I say I am trying to focus on the benefits this drug could bring in helping my RA. If anyone can ally my fears please let me know how it was it for you and how much benefit and or side effects if at all.
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Jadness
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Like you I found Benepali did not work sufficiently for me and started on Truxima (Rituximab) recently. I think it’s beginning to work for me but do not expect the full (hopefully beneficial) effect for a few more weeks. I found the drug infusion process ok although, like you, I don’t like having a cannula inserted. I kept telling myself to be brave as I’m desperate to find a drug that works after trying four others that didn’t over the past year.
I think that drinking loads of water in the days before your infusion helps to make your veins more prominent and the cannula insertion process easier. I have mine into my hand.
There are others in this forum who have found Rituximab to be very helpful to them; some have been on it for years. They encouraged me to try it and I’m sure they will do the same for you.
I haven't been on this, but if you put the name in the search box, I'm sure you will find loads of posts from people as it does seem a popular choice for many.
All the Biologics nurses I have encountered in the last three years having rituximab infusions have been absolutely superb. They are all nurses trained in administering chemotherapy so are well used to inserting cannulas——it’s not just like your average practice nurse who pops a needle in very occasionally.
They are so used to inserting cannulas it’s done very quickly and if you don’t watch you won’t know it’s there. I was diagnosed 17 years prior to going on rituximab so as you can imagine I have tried quite a few drugs....& for me, Rtx has had the most beneficial effect.
I was lucky & it worked pretty quickly, but do be prepared for a12/20 week wait before it takes its full effect.
Do explain you are needle phobic & they will take good care of you.
I always ask for the cannula to be inserted 6 inches above my wrist...that way you can’t feel it .& you can move your wrist.
At my clinic we all wheel,ourselves to the loo & back wheeling the drip stand...you cannot feel it in your arm . Do wear something .easy to get on an off not tight trousers with zips and buttons which are a bit difficult when one arm is not that mobile but It is very easy to manage.
The day before your infusion make sure you drink loads and loads of water so that you are really well hydrated ....that way your veins will be nice and malleable and the nurses will be able to cannulate you quite easily ......if they think you need it they will ask you to hold your arm under running warm water for a little while so that your veins plump up nicely.
Do ask if the clinic you attend serves food at lunch time.....if not take some food because you will be there most of the day. They Usually serve plenty of tea and coffee and biscuits but some don’t actually serve lunch . Also be sure to take your tablet,Kindle, ,books ......anything to amuse yourself because the time will drag However they give you antihistamine prior to the infusion and so a lot of us asleep a lot of the time ...so take a nice warm cardigan or throw to cuddle up under ... be prepared for the first infusion to last around 6 hours.
I have always driven myself there and back and I don’t find it a problem.
I do hope you decide to try it...I am very pleased I did.
Sorry the benepali hasn't worked well enough for you.
With regard to retuximab there's not a lot more I can add to what's already been said. However I've had six cycles of it and never had any side effects and have been so grateful for it, as I've tried many dmards and humira. So I'm hoping you will do well on it too.
I also have very hard to find veins and dislike needles. But the nurses put canulas in every day and are very skilled and confident. Just look away. They put a heat pad on my arm for about 15 minuted to warm my arm and hand up to feel the vein. They always get it so I'm sure they will for you too. Then it's plain sailing. There will be others there who will be nervous too
just give them a smile.
Tell the nurse if you feel nervous they are used to it and will support you. They are there to look after us. Take lots of treats with you.
The comments are very reassuring. I am tearful reading them, I am not looking forward to it. I have four Benepali injections left so in a month or so it will be onwards and upwards hopefully. In between drugs I need to get my immunity up and get some dental work done and treat some pre-cancer sun damage on my face which has been on hold due to the reduced immunity. Its 8am a gorgeous Summer morning the dog is waiting for some gravy bones. I think it will be a good day. Thank you all and for the telephone call yesterday
I receive my iv drugs using a Port that was put in 8 years ago. Works beautifully. Infusions never hurt. No problem with access. Suggest you inquire about a port
I had my 4th dose last Monday and the infusions aren't bad at all. After the cannula is in you can still move your hands and arms and go to the loo. Do you have anyone to go with you? You get antihistamines as well which make you drowsy so it should be fine.
understand your fears, had my first infusion july last year and was v v nervous so took several days to recover ... but it was my nervousness. 2nd one 2 wks later was fine and lasted me for a year, only got one 24th june this year and 2nd dose tomorrow and wd recommend it ; i get a biosimilar truxima which has replaced ritux here; hope this helps. cd you get a headset n sing to music looking away while they set it up - i've seen that work well. best of luck xx
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Newly diagnosed with RA and have a holiday planned abroad next month, any tips?
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Rituximab
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