Last reply 2 weeks ago
Next drug is cladribine /mavenclad

Hey guys, I’ve been diagnosed with Ms since I was 13 and had lots of scarring before then, had nearly 10 years of treatment. However, my Ms keeps becoming active.

The next and only drug they are suggesting is cladribine /mavenclad. So taking it for the short amount of time over two years.

I’d like to know what people’s experience have been taking this medication and how they are after the 2 years.

I don’t quite understand if you still get symptoms of having Ms or that’s it? I already have scarring in multiple places on my brain and spine so the every day symptoms are from this already exisiting damage?

It’s not something I’ve thought about till now, but it makes sense you’d still live with the damaged caused.

I guess I’m asking is what will change? as someone who seems to have had it all their life or most of it I’m not sure what to expect.

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stumbler
3 weeks ago

@shannon_ohara , the main purpose of all the Disease Modifying Therapies (DMTs) is to reduce the frequency and Severity of future relapses. So, a form of insurance for the future.

However, once the brain is prevented from attacking our Central Nervous System (CNS), it does have a chance to try and effect some repair of the residual damage from previous relapses.

This repair is contingent on the neuronal reserve that you have available. This reserve gets depleted as we age.


pauley
2 weeks ago

Hi @shannon,

Hope all well with you.
I’ve just finished my first years treatment of cladribine
I found no major problems apart from a little more fatigued than usual.
I’m due for my 1st bloods check in 3 weeks so should know what’s happening after that..
Have my neurologist review mid October where I’ll get some indication of how successful it is to date. My pre-meds mri showed new lesions on brain but no nnewd on spine so hoping…
I have noticed some symptoms I had to be much less annoying than usual
Fingers crossed…take with plenty of water…
Best wishes
Paule


shannon_ohara
2 weeks ago

Thanks for the info @stumbler. To my knowledge the myelin and brain scaring is healed as much as it can. So due to halting the attack, these areas could rapair more? That’s great news if it occurs! I have quite a bit of scares on my communitation center so hopefully it can get a little better. 😊

Seems like you’ve had a good experience with mavenclad @pauley, that’s encouraging. Does this mean you haven’t had tests over your first year of treatment? I wish you luck with mri 😊


pauley
2 weeks ago

Hi @shannon
I hope it all goes well for you
I just finished my second weeks treatment in the 1st of the 2 years and will have my 1st bloods done middle of this month and then before I’m due back for my 1st neurologist appointment since DX and post treatment and will also have results of an updated MRI to check everything is ok…
Hope is the thing with feathers….
Let me know how you get on with your treatment
Take with plenty of water as I did feel a burning sensation when swallowing the tablets
Best of luck


stumbler
2 weeks ago

@shannon_ohara , it may be possible for the brain to reroute some affected neural channels, avoiding the scarring.

Our brains can be quite clever. 😉

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