Dizzy’s Cladribine Adventures – Part 1

Dizzy and I survived our first week of Cladribine! So we are making this little post all about these little tablets, what they do and our experience with them so far. 🙂 

What is Cladribine/Mavenclad?

Mavenclad is a disease modifying treatment for people with relapsing remitting MS, which has been available in the UK since 2017. It is a second line defence drug, which means it is for people with active/evolving MS or/and people who have not got on well with the first line defence drugs. As I had two relapses in the year that I was on my previous treatment, this one became an option for me! 🙂  

How does it work?

Cladribine is part of the chemotherapy family, and works by reducing the number of white blood cells: the T and B lymphocytes. The hope is that it kills off most of the naughty white blood cells (the ones that get a little enthusiastic and attached the central nervous system), and that the new ones will not have this naughty trait.

How do you take it?

Cladribine is a tablet drug (which Dizzy and I like a lot!). And with this one it is taken as two courses over two years. In year one you take course one: tablets for up to five days, which is then repeated a month later. A year later you take course two, which is a repeat of year one.

After these two courses, your treatment comes to an end, and hopefully your MS will be a well-behaved for the next few years. 

The number of tablets is also dependant on your weight (as Dizzy and I are only little, we have the smallest amount of tablets – just 4).

What are the benefits?

Cladribine is suppose to reduce relapses by 58% and disability by 33%. There is also now evidence that some people are not needing another treatment for up to and over ten years after completing the second year. 🙂 It is also a drug which seems to be well tolerated by most people.

What are the side effects?

• Headaches
• Low white blood cells
• Increased risk of viral infections, such as shingles
• Back pain
• Increased fatigue at some stages during the two years
• Hair loss

Our Journey so far! Week 1:

Dizzy was all prepared to make a little cladribine diary: one entry every day for the days we were taking the tablets. 🙂 But there wasn’t enough to write about. Not even for a Dizzy! We had the same experience every day and it was extremely uneventful. 🙂 We took our tablets at 7.30pm (after Dizzy had finished her tutoring – just in case we got any tricky side-effects), watched some telly and then popped into bed about 10.30. At precisely 11pm we would feel a little sicky, which Dizzy didn’t really mind, as it meant she could have ginger sweets (which we reserved for any cladribine sickness), and within an hour the sickness was gone. That was it! 🙂

We also made sure to take our tablets Monday-Thursday, just in case we needed to get hold of anyone with any questions. 🙂 

The four days were super easy, but the fatigue did hit on the Friday! And last week there were some days where we couldn’t do much more than sleep and snuggle on the couch with a blanket. But a week on and the energy levels are nearly back to pre cladribine levels. 🙂

Overall the experience has so far been positive for us! And has by far been our easiest MS treatment. We start our second week in two weeks and then that will be us all done for the year. Just keeping out fingers crossed, and a big supply for new ginger sweets in the cupboard, for an easy second week. 🙂 xxx