My experience of the DMT cladribine

Mon 11 April 2022

Dizzy

Heather was diagnosed with relapsing MS in 2014. She’s an actor and a teacher, and also blogs as ‘Dizzy the Donkey’ – as dizziness is her main MS symptom. She started cladribine (Mavenclad) in October 2021.

Before starting cladribine, I had been on glatiramer acetate (Copaxone) for a year. During that year though, I experienced two relapses. So it was decided that a stronger medication needed.

I knew that I wanted to try cladribine four years ago (I like to research everything and I’m very stubborn), but I didn’t qualify till last year. My MS team were amazing during the process. My MS nurse helped me with any questions I had, confirming in my mind that I had decided on the right treatment for me.

My experience with cladribine so far

So far, my experience with cladribine has been really good! It is a super easy treatment to take, as it’s administered as a tablet for a total of twenty days over two years.

I love that I can completely forget about taking any medication for most of the year. It has made me feel much more relaxed about my treatment. And the fact it’s a stronger medication helps me feel more in control and positive about my future with MS.

Fatigue was a side effect

I was in a huge state the first week I took the tablets (I always am when starting any new MS medication), but nothing really happened. I felt a little queasy after taking each tablet, but it was nothing a ginger sweet couldn’t sort out.

The main side effect, which actually came a couple of months later, was fatigue. I was told that this was normal during weeks 9 to 13, and I was textbook. The fatigue did wipe me out, and it was worse for me than my normal MS fatigue. For a few days I did sleep for about 20 hours… but as quickly as it came, it went.

Researching my MS treatment

I will definitely stay on cladribine. It’s a two-year treatment, so even if I did have a relapse this year (quickly touching wood I don’t), it would be too soon to properly judge if the treatment was working. Also, the ease of administration and small number of side effects I’ve experienced makes it a really easy treatment for me to take.

For anyone considering this treatment, I would tell them to do their research and ask your neurologist and MS nurse as many questions as you want. Also it can be invaluable speaking to fellow MSers who can tell you what to expect and ease any concerns that you may have.

Taking to other people who've taken cladribine

I found lots of amazing people on social media to talk to. There are some super Facebook groups dedicated to people considering and starting their journeys with cladribine. On these, the members are extremely helpful, and I know I can always pop on and ask any questions that I may have. Also charities forums and message boards, like the MS Society and Shift.MS, have been invaluable to me.

I believe it’s super important to take charge and be happy with the decisions that are made around your MS. It’s your body! Let your health team advise you, but ultimately pick the treatment that you feel is right for you.

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