Zoe recently had her first Ocrevus infusion, she shares her experience and tips for others who are due to get their first infusion.
I was diagnosed with RRMS in 2015, following a case of optic neuritis in 2011, which left me blind in one eye for a month or so. Despite being eight years into my MS diagnosis, this is my first venture into Disease Modifying Treatments (DMTs). So, I spent some time researching Ocrevus and what to expect. Although there was lots of useful medical information out there, I struggled to find anything from someone’s personal account of what it’s like to begin the treatment. By sharing my experience, I hope it helps someone else!
After a relapse in October 2022, which left part of the side of my face numb for three weeks, my MS team recommended I start a DMT. Once they had discussed the different treatment options with me, I spent time doing lots of research. I was impressed by the range of treatment options available, including tablets, injections, or infusions. Some options aren’t available for certain types or stages of MS, so your MS nurse will be able to advise which options apply to you.
I learned that some treatment options are taken daily, while others are monthly or less often, such as infusions which are every 6 months. Side effects vary across the different options, but common ones include flu-like symptoms, fatigue, and allergy-like symptoms.
As a busy mum, working part-time, and this being my first DMT, I didn’t want to have to think about it too often. Therefore, I felt that Ocrevus was the right choice for me as after the first dose, which is split into two infusions given two weeks apart, the infusions are every 6 months. Once you know which treatment types you qualify for, I’d recommend looking at various MS charity websites to read about the different types and compare the pros and cons to find what will work best for you. The MS Trust website has a useful treatment comparison tool called MS Decisions, which I found very helpful.
Once you’ve confirmed your treatment option with your MS team, who will discuss everything with you, they’ll start the process to get you ready to begin your treatment.
For Ocrevus, I was asked to go for a full set of blood tests and a chest x-ray at my local hospital. Once I had done these and they’d received the results, I got an appointment two weeks later for a full-day infusion. If your hospital doesn’t do walk-ins for blood tests, I’d recommend booking an appointment as soon as possible, to avoid delaying your treatment. Mine had a wait time of one month before the first available blood test appointment!
I was scheduled to arrive at 8am, and I could eat and drink as normal before the infusion, which was a relief as I don’t cope well without food! Before arriving at the hospital, I had a quiet morning watching CBeebies with my toddler, who kindly woke me up at 5:30am. I had a filling smoothie for breakfast, prepped my urine sample as requested, and then was dropped off at the hospital.
It’s recommended not to drive on the first infusion day, as you may feel tiredness or sickness afterwards and so it may be unsafe to drive. Speak to your MS nurse if you’re unsure about this.
Before the appointment, I recommend drinking plenty of water and eating a good breakfast. Also, if you can, fit in some light physical activity (although I didn’t manage to). It is recommended as you may feel tired and sluggish afterwards, even just from sitting in a chair all day!
It’s also a good idea to wear comfy clothes and pack water, snacks, a good book and headphones so you can listen to a podcast. If, like me, you’re fitting in some work, remember to take your chargers.
The nurses offered me hot drinks and biscuits throughout the day and a sandwich at lunch. However, there wasn’t anything Overcoming MS-friendly or even vegan, so I’d recommend bringing a packed lunch if you want to stick to your Overcoming MS diet. I prepared sticky sesame chickpeas with salad and rice; it was delicious and something I was looking forward to all morning. If you’ve not joined the Live Well Hub yet I recommend joining, as there are lots of recipes posted there from the community to give you some inspiration.
I was greeted by very friendly nurses at the Infusion Day Unit and allocated a big comfy chair with a little table and pillow to rest my arm on. My blood pressure was taken, I gave in my urine sample, and then it just became a waiting game!
Once they had my cannula in place, before attaching the Ocrevus drip I got a dose of steroids, paracetamol, and antihistamines to help combat the allergy-like symptoms. An hour later, I was then hooked up to my Ocrelizumab drip, which was set to run for around 4 hours. I was in a large, bright, and airy room with lots of chairs but there were only three of us with MS. The nurses were chatty and friendly, but I also felt like I could relax and doze off if I felt like it.
Once my infusion was complete, I was free to go after the nurse checked that I was feeling well and not having any major side effects.
Since my diagnosis I’ve learnt that the immune system is made up of many different cells that usually work well together to protect the body from potential infections. However, in MS, the immune system attacks the central nervous system (CNS) by mistake, damaging the myelin sheath. Two types of immune cells in particular are involved in this attack, B cells and T cells, that often work together in an immune response.
Ocrevus works by finding mature B cells and reducing the number of them in your body. T cells are less likely to attack without B cells, so this reduces the chance of an attack on your CNS.
As this was my very first infusion, it was only a half dose to make sure I responded well to the treatment before having a full dose in one go. My next appointment is booked for two weeks’ time, to get my second half dose.
After this, I was told that my infusions will be about every 6 months, with a check-in from my MS team between each one. Around 3 weeks before each of my future infusions, I’ll also have blood tests to ensure everything is as it should be before my infusion date. This care may vary depending on your location in the UK and in other countries.
On the Live Well Hub, there’s a whole community of people living well with MS who can help answer questions or concerns you might have. If you’ve not joined already click here to join. You can also join a local Circle (support group) in the Live Well Hub.
The Overcoming MS website as well as other MS charity websites such as the MS Trust, MS Society and MS-UK have lots of information about treatment types. Make sure to discuss how you’re feeling with your MS nurse as well, as they’re there to help you through the whole process.
Good luck if, like me, you are just starting your treatment journey! It can feel daunting but can also be a really positive experience. My top tip is don’t be afraid to ask questions and reach out to your support network if you’re unsure about anything to do with your treatment.