Rituximab infusion, things I wish I had known

Please note this is my personal experience of Rituximab, your treatment may vary, you should discuss your individual plan with your doctor. I am not providing any personal advice.

So you need to have a biological infusion?

My first thoughts were:

  • What the hell is that?
  • How long will it take?
  • Will it hurt?

And the most important question:

  • Can I go to the toilet while I’m hooked up to the machine?

My infusion was called Rituximab (also known as Rituxan or MabThera), and it was to treat my ANCA associated Vasculitis. I had six of these infusions a few years ago, but I had totally forgotten the whole experience with this lifesaving drug. The Vasculitis UK patient group calls it Unicorn juice for its magical powers, which always makes me smile.

So what is a biological infusion?

Biological infusions target a specific immune reaction in your body which is causing the inflammation response. Rituximab is a genetically engineered chimeric monoclonal antibody which depletes the B cells which have the marker CD20 (a protein) on the surface of your cells. Rituximab sticks to the CD20 proteins, and the cells of the immune system pick out the marked cells and kill them. This reduces the immune system actions against us. This is all a little technical, but basically, it reduces your B cells and diminishes the immunes system ability to launch an attack on self (i.e. you).

How did I feel the days before and why did I need this treatment?

Before the treatment, my vasculitis was flaring, it affects my ears, nose, eyes, kidneys and the main aortic arch out of the heart. I am exhausted, I cannot think, I cannot walk up a small hill, and I cannot concentrate or remember the right words to say. I just want to sleep all the time, and I’m off my food even though my steroids are increased and therefore I should have an increase in appetite. I am desperate for something to make me feel better and to give me some energy.

It isn’t helping that my birthday is the day before the infusion, and my lovely husband is planning a meal out to celebrate… I go along with it and just accept that afterwards, I will sleep for a week. I’m secretly looking forward to the sleepy side-effect.

Getting prepared

You sit in a large chair for a long time during the infusion, so I would suggest you prepare by picking out your most comfortable clothes, fashion should be ignored. I choose a long tunic and leggings. Remember to wear sleeves which you can roll up to get the cannula in the crease of your elbow and to allow access for the nurses to check your blood pressure.  I went in slip-on shoes but took a pair of socks so that I would lie in the chair without my shoes on and not worry that everybody will have to look at my manky feet. Also, this will keep you warm, and then if you get too hot, you can take them off.

Arriving at hospital

For those who have read my book, you will be fully aware of my love of cappuccinos, we collected two large cappuccinos and Jaffa cakes on the way to the ward. We checked in at the ward reception and were allocated a chair number, a big blue thing that is comfortable but does get a little hot halfway through (or maybe that was just me overheating). Then you wait for the nurses to take your observations, blood pressure, oxygen levels (through your finger using a pulse oximeter) and the dreaded weigh-in.

I pop to the toilet before the next stage as it gets harder to go once you have a needle in the arm. You then have the cannula needle put in, mine was positioned at the elbow crease, but it can be in the back of your hand. This part is always a challenge as my veins seem to disappear as soon as somebody looks at them.

And that is it, you are ready for the treatment.

Treatment process

Well, it takes between 5-6 hours, but time flies, mainly because it really does knock you out. You are given Paracetamol, Methylprednisolone and Piriton (an antihistamine to reduce the risk of a reaction to the Rituximab) as pre-meds. Then a small amount of fluid is pushed through the cannula to check all is ok, next the drug is hooked up. It is a small bag, about 350ml, but it goes in slowly.

My last Rituximab was about 4 years ago, so the nurse explained that they would go slowly to ensure I didn’t have a reaction. If you have had a successful one recently, they can go faster. For my infusion two weeks later it went in quicker, it cut the time down by 45 minutes but going more quickly made me feel a little sick.

The nurse will check your blood pressure and oxygen levels every 30 minutes, and the machine will beep every 30 minutes to get a different nurse to come and set off the next 30 minutes. If you are tolerating the treatment well, every 30 minutes the drip rate of flow is slightly increased. So, although you are sleepy, you are never allowed to sleep for long, as your ‘vitals’ need checking all through the treatment.

Coffee and biscuits were brought round regularly, and sandwiches offered at lunch, my husband had popped off to buy lunch already, so I didn’t sample these.

Once the drug is fully infused, another short fluid flush is completed, and then once the cannula is removed, you can go home. Go steady, you have sat down for over 5 hours and may feel a little wobbly, but otherwise, you should feel quite ok. If not, please tell somebody.

And yes, you can go to the toilet throughout the infusion, but you remain hooked up to the infusion pump, so it is a bit of a tricky manoeuvre, think about a shopping trolley with a dodgy wheel in the supermarket.

Travel home and the evening

It is recommended that you do not drive, partly due to the Piriton causing drowsiness. I couldn’t keep my eyes open or my head up, probably not the safest way to drive! In the evening I ate quite well as the infusion didn’t seem to put me off my food, but I don’t think my conversation was up to much, I think my brain was somewhere else, probably over the rainbow. My parents-in-law were staying as they had collected my children from school, which was brilliant as it meant there was enough bustle in the house for me to go to bed super early and leave them all to it. Sleep came quickly and for a long time.

There are a few side-effects that you need to keep an eye out for, but if you have any concerns, please call your doctor immediately. Side-effects include risk of infection, diarrhoea, peripheral oedema (swelling), muscle spasms, arthralgia (joint pain), back pain, dizziness, tremor, insomnia, cough, dyspnoea (difficulty breathing), epistaxis (nose bleeds) and hypertension (high blood pressure)[i].

I had a little swelling in my fingers and lower part of my legs, and during the infusion, I got very hot halfway through. Both were manageable and didn’t really cause me any concerns.

Next few days

Well, I slept for Britain, a truly fantastic amount of sleep. I’m not sure scientifically the reason for this, part of it may be the antihistamine (Piriton) or it may be the infusion or the vasculitis flare. I also suspect that part of it is the fact that the treatment has allowed me to stop and rest. I always continue at such a pace, but once that drip is put up, I feel that it is my time to completely stop, to rest and to let the unicorn juice do its magic. The relief of letting everybody take the strain for a few days is unbelievable, so I suggest you go with this feeling and let your body rest, start to heal and trust your response to the treatment.

I was informed by my consultant that it can take between 4-6 weeks for the effects of the treatment to be felt, so do not expect instant results.

Enjoy your sleep. Goodnight and sweet dreams.

Fingers crossed it kicks vasculitis butt. 

Jane Xx

You can read more of my work, including my book Chronic Illness: learning to live behind my smile, via my website: www.chronicillness.co.uk

Vital information about vasculitis can be found on the Vasculitis UK Website: https://www.vasculitis.org.uk

Quick legal comment, this blog is my journey, none of the statements is personal advice for you, if you need personalised help, please speak with your doctor.

[i] https://www.nice.org.uk/Guidance/TA308

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