Mavenclad (Cladribine) experience?

Everyday living
1

Hi,

I am newly diagnosed with RRMS and am considering treatment options - I can’t see a thread re: Mavenclad (Cladribine) and wondered if anyone has any experience of this newly licensed drug? It seems attractive in that it’s only 2 treatment weeks a year for 2 years so wondered if anyone has started treatment on this and what they think of it? I think I am currently leaning towards Tecfidera (for which I’ve read all of the many helpful posts), but slightly put off by all of the side effects, so difficult to decide!

Many thanks,

Paula

2

Hi Paula, there is a new group on face book UK Cladribine users where quite a few members have just started or are about to start Cladribine treatment you may find this site useful. Sue

3

Thanks Sue

4

I started Cladribine, via injection, in February. Had a blood test at the start of this week and should be going for the 2nd course of the first round next week and then a wait, with the regular blood tests, until February next year for round 2 with further blood tests until April 2020.

So far I don’t think I have had any side effects from the Cladribine only from the anti-virual drug I have to take. Slight upset stomach meaning a rush to the toilet. But it is like once in a day and then no problems for several days/a week and then again.

Probably very early days in the treatment but, so far, I haven’t noticed any changes.

5

MS2017: Where are you having this treatment done?

6

While you wait for a proper reply, I believe the London Hospital have been treating MSers with Cladribine. Multiple Sclerosis Research: July comes Early https://www.qmul.ac.uk/media/news/items/smd/199425.html

7

I am getting the injections done at the Royal London hospital but blood test etc are being carried out at my local hospital in Southend

8

Wow, ms2017 it all Sounds really promising! I’m currently on plegridy, have been for a year and absolutely detest it-the injection process is the only ‘plesant’ bit-, so I wonder if it’s worth speaing to my consultant about switching. I really hope it continues to go well for you!

Bx.

9

Bettiboo - Hi, I am someone who has changed treatments 3 times in the last 4 years (copaxone injections then Dimethyl fumarate (Tecfidera)now Cladribine), surely the only question to ask (if the side effect are tolerable) is ‘does my current medication help me’? The Only reason I switched is because my scans revealed new lesions and my baseline continued to deteriorate so I swapped on consultant recommendation. I know exactly what you mean about some drug side effects but I’d rather cope with those if I thought my drug was helping me. And you may switch to something less effective. Just a friendly word of caution. I hope you don’t mind and I also hope you get to a good place