Regan's treatment story: Lemtrada

18 August 2021

Regan, 22, was diagnosed with MS when she was just 16. Whilst navigating school life and completing important exams, she started her treatment with Lemtrada – one of the strongest disease modifying drugs available for relapsing remitting MS.

Here she sheds some light on her experience with the drug. She discusses what infusion clinics are like, the side effects she experienced and the ongoing monitoring after treatment.

Switching to Lemtrada

Initially I was given Copaxone for my MS. Unfortunately I ended up having anaphylaxis and swelling on the brain with that drug so I ended up coming off it. It was quite hard to deal with because I was trying to go to school and I was trying to hide my MS a lot. I’d only told my friends at that point. In school I ended up using a crutch, so people were noticing more and more that there was actually something wrong. 

After trying Copaxone, my MS team thought it was best to go for a harder hitting drug – the only issue was my age, being under 18 at the time. It took a while, but eventually I was given the okay to start treatment with Lemtrada. It was quite intimidating going from the Copaxone injection to this big IV drip given in hospital. I was offered another treatment, but I ended up testing positive for JC virus so that cancelled out my other option. I was sort of left with Lemtrada – it wasn’t so much of a choice at the time.

Preparing for treatment

I had to have a tuberculosis (TB) test done. They put a little bubble of fluid under your skin and if it goes flat, it basically shows that you don't have any signs of dormant TB. I also had a whole load of bloods done to get a baseline because Lemtrada can affect your thyroid and liver function. I had a chest x-ray to look for dormant TB and to make sure I didn’t have any respiratory issues. All these tests were done on the same day at the clinic.

The treatment courses

In your first year, you have five days of the treatment. It’s given as an infusion in hospital. You also have your pre-treatments, like antihistamines and steroids. I had anti-sickness medication too because I don't tolerate medications very well. You get those for the five days.

Then the second year, it was a three-day treatment course. Again, you have the pre-treatments like steroids. You get a whole load of aftercare for each treatment, such as antifungal and antivirus medications because of your weakened immune system.

Following both treatment courses, you do have ongoing monitoring. I had my bloods done every month for four years after my second treatment course. I’ve only just finished the monitoring from Lemtrada.

It was quite intimidating going from the Copaxone injection to this big IV drip given in hospital.

Infusion days

The infusion itself takes quite a while. You go into hospital in the morning and you usually leave late afternoon. Sometimes they are faster or slower depending on how you react to the infusion. When you first get there, you get all the pre-treatments I mentioned before. You’ll usually get your cannula too which will last you maybe three days at most.

You can move around with your drip – it's okay to do that. You're not really stuck in the chair at all. Most of the time, it's okay. Just take a book or something with you because it can get quite boring when you're there for eight hours. It is a long day.

I had my infusions in the summer and my hospital would get really warm. It's handy to wear a t-shirt and shorts or light bottoms so you don't get too hot. The nurses regularly monitored my temperature and vitals.

Tricky timing

Unfortunately, my infusion ended up landing two weeks before my exams. I was trying to revise, plus trying to take in all this information about this drug I was being given.

I had to be really careful with my immune system at that point so we had to arrange a private room for my exams. It just made the whole thing more stressful. You have this big treatment and you have exams that you’re told are going to decide what you do when you leave school – both at the same time. I felt like I couldn’t focus on both these things at once. It was a lot to deal with at the time.

The second treatment course was tough too. Again, it fell right before my exams and my 18th birthday. I couldn’t go out or do anything because of my weakened immune system.  It was quite disheartening too because the first treatment course hadn’t worked as well as hoped. I felt like what’s the point of doing it again? Looking back, the timing could have been so much better. 

Side effects

The first few days the infusion went a bit too fast and I ended up with migraines and sickness. After that they slowed things down. It gets easier the more your body gets used to it. 

My joints did feel a bit achy and I felt more fatigued following the treatment. I think the stress of having the treatment affected my body too – it’s quite exhausting. Other than that, I didn’t have many side effects, personally, I was quite lucky that way.

Obviously you're at higher risk of colds and other infections, but it's just trying keep on top of it. You do get aftercare, like antiviral medication, which I mentioned before. It's really important that you take those because you don't want to go through a treatment course of Lemtrada to then get an infection that knocks everything.

The outcome

Unfortunately, Lemtrada didn't entirely work for me. The first year, it did give me a bit of a boost and it did hold off a lot of the physical symptoms of my MS. My walking maintained for a good while. Now I’m looking to start a new treatment. I've had Tecfidera over the last year because of Covid-19, but I’ll soon be starting Ocrevus. 

Every drug doesn't always work for everybody, but it was a great opportunity to have Lemtrada.