@kimberley85 

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kimberley85

Lemtrada?

Hi all, this is my first post so I’m kinda introducing myself too, I’m pretty new here although not new to MS. I was diagnosed almost 4 years ago with RRMS. I’m 32 and have 2 daughters age 9 and 2 and I work full time as a support worker for people with complex learning disabilities. Anyways, my MS is extremely active and I have very regular flares, I struggle mostly with my balance and vision as well as left sided weakness vertigo and fatigue. Iv been on copaxone which didn’t help whatsoever and am currently on gilenya which I am also still having extremely bad flares whilst on including a recent relapse in November where I lost all feeling in my right leg (I have it back now thank heavens!) So to my question....... my Neuro sent a letter a few weeks ago suggesting a change in medication and asked me to choose from mavenclad, tsabri or lemtrada, after a lot of soul searching and research I decided on lemtrada, I informed my MS nurse who informed me that my Neuro would need to have a meeting with other doctors to discuss if it was appropriate for me but in her words she “couldn’t see them disagreeing with my dicision as I’m a prime candidate for the drug” so as far as I was aware that was it I was just waiting for them to get everything in order and send for me.... fast forward to yesterday and I get a call from the nurse to say they’ve denied me the lemtrada based on the fact it probably won’t work because I’m “young” IM 32!!! And that they want me to try mavenclad instead. To say I’m devastated is an understatement, I made the hardest decision of my life to choose lemtrada based on the side effects etc because I really believed it would be the start of my new life and as ms free as I’ll ever be to be told that some people who’ve never met me made that decision irrelevant and are ruling my life for me! Does anyone know if I can appeal this decision? And has anyone had any good results with mavenclad? Thanks so much in advance and sorry for the essay!
@Marcyg921

Hi, sorry to hear about what's happened and I honestly can't see a reason why you shouldn't have been given Lemtrada unless they knew for certain it wouldn't work. As for being young, sorry that is a ridiculous reason to not give you Lemtrada because as far as I'm aware, its better to get it when you're young and heck, I'm only 25 years old and I'm getting prepared for Round 2 in just over a weeks time. I'm not saying dismiss the other treatments and obviously they must have a reason for you to go on Mavenclad which I haven't had so can't judge it but if you feel Lemtrada is the one you want then definitely appeal it, maybe go and speak with your Neurologist again or perhaps look into seeing a new Neurologist.

@Stumbler

@kimberley85 , give the MS Society Helpline (0808 800 8000) a call and seek their advice. It can't be a new problem to them. I also found this page, which is specific to the Bristol Clinical Commissioning Group (CCG). https://www.bristolccg.nhs.uk/about-us/what-we-fund/how-i-make-appeal/ You may be able to find a specific webpage for your local CCG.