Hi everyone,
I received my diagnosis today of relapsing-remitting MS. Apart from crying in the nurse’s arms outside the consultant’s room, I think I dealt with it quite well…
Doctor would like to put me on Mavenclad, and I should hopefully be starting that in a few weeks tops; does anyone have any experience with this drug?
I think although I was 98% certain I had MS before I was told today, it will take some time to fully process.
Hope you’re all doing okay.
L x
Hello L,
If you are on FB there is a closed group for UK Cladribine users (Mavenclad). The people in there are either considering, offered, taking or have taken this treatment. They are a kind friendly group with quite a lot of experience.
I took Cladribine (the injection form of Mavenclad) in 2018/2019 and everything went well with it.
I hope this helps.
MS2017
Thank you @MS2017, that is really helpful, I will take a look at the FB group 
I expect you have already been told most of this stuff already, but it’s from the professor of neurology at Barts and might be of interest.
Thank you @whammel, that is a super helpful link - will give it a read through
Hi guys,
Thought I would pop back on here with an update - how is everyone doing? 
My Mavenclad prescription has been signed off and I will be starting on 25th August - looking forward to getting started and kicking MS’ backside! Joined a couple of groups on Facebook for people that are taking Mavenclad, and everyone has been so supportive on there and offering great guidance.
Since my diagnosis in May I’ve had two new symptoms (on top of all the others that grace me with their presence); patchy numbness on the left side of my face, and the MS hug where I can’t seem to take a full breath.
The Overcoming MS diet has been going really well, but I can’t say I’ve seen any drastic changes as of yet - I’ve been needing to keep an eye on my weight for the medication, as my weight needs to stay within certain perimeters for it, but it seems to keep slowly going down, then up a tiny bit, then down again…tiring.
How has everyone been dealing with the heatwaves? I personally cannot wait for winter to be here, I am done with summer 
Take care everyone! And we’ve got this
Glad to hear you’re starting treatment soon - sounds like you’re ready for it and also good to hear you feel very informed/supported.
I’m still in the process of getting on Kesimpta, but should hopefully should start this year. Not looking forward to the injections, but it was that or an IV drip (Ocrevus) so being brave as don’t want to trek to hospital every 6 months! Is it pills for Mavenclad?
Hate the heatwaves!!! Currently it’s just my hands that are numb and I get a ‘cramp-like’ feeling which isn’t the dream. But all in all, hanging in there! My MS nurse recommended a lot of fans/icepacks and it’s amazing how that helps even when not applied to my actual hands. How are you doing with the heat? Sorry to hear re MS hug - I had a tight feeling a while back but not to where I couldn’t breathe. So sorry you’re going through that and hope your symptoms all ease up a bit soon!
@mackenzieblackman - good luck with Kesimpta! I’ve seen a lot of people on that I’m not a fan of injections either, so chose Mavenclad at the advice of my consultant, as it is tablets
Glad to hear you are doing okay with the heat; sorry to hear about your hands, but that is such a good idea re the cooling techniques I don’t really cope with the heat very well, it seems to exacerbate my symptoms, so spend a lot of the time just laying still under the ceiling fan haha.
All the best 