Advice on RoActemra/tocilizumab infusion : Hi everyone... - NRAS

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Advice on RoActemra/tocilizumab infusion

12Chrissy34
12Chrissy34
8 Replies

Hi everyone! I'm due to have my first tocilizumab infusion on Tuesday next week and I've got a few boring logistics questions that the hospital didn't really answer for me:

1. Is it true that I should be able to work or read while being infused or is this overly optimistic?

2. How long does it typically take? I want to book a taxi for this first one as I know dizziness is a risk and I don't want to be stranded with a car. Appointment starts at 2pm, am I going to be out by 3? 3.30? Or is it so changeable that I'm better off calling for a taxi after I'm done, and wait?

Thanks!

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AgedCrone

Why not give your rheumy nurse a call......she will be able to advise.

Or call the clinic where you will have the infusion...I find they are very helpful.

Once you are cannulated & the infusion starts it’s easy to read/write on a tablet kr laptop.

I’m on Rtx infusions so don’t know how Toxcilizmubab works, but off the cuff I’d say call the taxi when you are finished.....if a few patients need a bit more time....things can take a bit longer. My clinic call taxis all the time & they turn up pretty quickly.

Good Luck......hope it works for you

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poemsgalore1

I don't know how long the infusion will take. I had Rituximab which took 6 hours and yes, I was able to read, use my iPad and write. Plus others have taken knitting and hand sewing to pass the time. This might help. nras.org.uk/publications/me...

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Pat9442

I have been having these infusions for a year now. Normally I set aside about an hour and a half. The actual infusion takes less than that but sometimes other patients take up the nurses time for longer than normal. Yes I read, drink and treat myself to a couple of nice snacks. Sometimes we just chat as there are often several of us in the room. I drive there and back (30 miles) and have never had any side effects.

Don’t worry it will be fine

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Silverpixie

I have been on tocilizumab for over 2 years now and it has been a completely life changing drug for me ( after 5 other failed biologics). I feel amazing. However, I have weekly injections that are delivered to me (I have them delivered to the local chemists as I am working) and I do them myself. Perhaps if the drug does work (it took 3 months to work) you could ask about this option which is much more convenient. I do hope that you get the same relief as I did.

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12Chrissy34

I deliberately chose infusion - bad experiences with both Benepali and mtx injections, plus it should make it easier to travel (with luck, and if it works!). I'm lucky, have an iv clinic close to where I live and work is very understanding

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Silverpixie

I'd never thought of that! I'm so well I have started to travel more and recently did a tour of Japan and Hong Kong and it was difficult to keep my injections at the correct temperature even with a medigen bag. I want to go to Australia so maybe this is an option to discuss with my rheumy nurse. Thanks.

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12Chrissy34

I know a lady on HPN who flies BA just because they'll refrigerate her nutrition bags in flight - might be worth asking about that when you book too

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fred42

I have now had 3 Tocilimuzab infusions and believe it is beginning to work, no side effects to date and I quite enjoy the experience of a nice quiet rest once a month. It usually takes about 1.5 to 2 hours but does depend on how busy the biologics ward is that day.

I chose the monthly infusions as I have had problems with other drugs and this way I am closely monitored every month and there is always a registrar around if needed.

I hope it goes well for you.

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