My week with Lemtrada

Long time no speak! I do apologise about that, my head is really not with it at the moment and I just can’t seem to concentrate on anything for long enough to put pen to paper. Or fingers to keypad?

Last week I started my first ever DMD! Can we get a woop woop?

Last Monday to Friday was spent in a hospital receiving Lemtrada. I was allowed to go home every night, which I do think made the whole week so much easier.

For anyone that doesn’t know how Lemtrada works here is a quick explanation courtesy of the MS Trust:

Lemtrada is a disease modifying drug (DMD) for active relapsing remitting MS and very active relapsing remitting MS.

You take Lemtrada as two treatment courses of intravenous (iv) infusions.

• the first course consists of iv infusions on five consecutive days
• the second course is taken 12 months later and consists of iv infusions on three consecutive days

Lemtrada works by binding to and killing immune cells (lymphocytes or white blood cells) which are involved when the immune system attacks myelin. It is thought that the immune cells which grow back after treatment do not cause damage to nerves.

So my first year is done! The first 3 days also involved a IV of steroids before the Lemtrada was allowed to start. It was a very very long week but I feel so much better knowing that I’ve finally done something to help combat whatever is going on in my head. Quite literally.

Days 1 – 3 were pretty smooth sailing, I found the tedious thing about it all really was because everyone else coming in for IV treatment came and went I ended up having the same conversation of “oh I’m not in for *insert whatever they’re having done as all seemed to assume it was the same*, I have MS” “Yes, yes quite young to be going through this” “No, no one else in my family has MS” and so on, so forth X that by however many people came and went each day X by the 5 days in hospital = very disgruntled Hannah by Friday. I know people were just interested and most meant no harm but yeah, really considering that was stressed me out the most about the first bit isn’t too bad really.

By day 4 though, the rash came. Now whether this was because it was day 1 without steroids, who knows. My neurologist told me on the Friday that he was expecting it but I think the nurses just didn’t know what extent to expect it. I am only the 2nd person to ever receive Lemtrada at this hospital so it was a learning curve for all. On the Thursday the rash caused such panic that the nurses called an on call doctorel who tried to get me to stay over night, in a ward with a lady who had severe tonsillitis, to say that I refused to stay is probably an understatement. I completely freaked out at the idea of having a weekend immune system and being cooped up in a room with this poor lady, the doctors understood eventually and let me go home though so all was well!

Here’s a bit of a peak at the rash though, as a pre warning for anyone awaiting this treatment, it’s completely normal and totally expected so no need to freak out like I did

Full blown hives absolutely covering me, itched like mad but it’s gone already so not all bad! I did have to be injected with antihistamines because the tablets weren’t bringing it down, but grand scheme of things it’s not all bad.

Now for the monthly blood tests to commence, for me I don’t see it as any different to if I had to go to hospital to receive Tysabri each month, which was my other option for treatment.

Let’s see how things go with time though, hopefully the results will keep on coming back ok and that’s all I want for the moment.

Anywho, sorry if I’ve totally bored you all to death! Hope everyone is doing ok and have enjoyed the passed few weeks!

1. Facing your fears is alright really
2. Nurses are absolutely amazing
3. Being in a hospital for a week is absolutely mind numbing

H x