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.