Last reply 1 year ago
What happens if Lemtrada fails

Hi I was diagnosed in June 2016 following a confirmation of optic neuritis (symptoms were in Sept 2015), I also have cognitive issues and Lhermitte’s sign, I have since developed crawling sensation and vibrations in legs and also now arms and pins and needles and numbness in fingertips. I had repeat MR which has confirmed relapse and have been given the option of Lemtrada or Tysabri. I have done a lot of reading around but still very confused about what to do, The MS nurse has taken all the bloods required for both and maybe the JC virus result may help my decision. I know if the Tysabri does not suit / work then Lemtrada would be an option but what happens if I go straight for the Lemtrada and it doesn’t work, is there any other option available. I am in the UK.

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stumbler
1 year ago

@pinky50 , you shouldn’t get too tied up with “what if”s. Life is unpredictable as you know from your job, so if we got to tied up with all the what-if’s, we’d be too scared to leave our homes.

So, try and be positive that either the Tysabri or Lemtrada will work for you


tracyd
1 year ago

@pinky50

Sad that a diagnosis has led you here, but hey you made it here to the sanest most positive place on the net to have MS 🙂

(okay sane might be a stretch)

If lemtrada doesn’t work for you then there are a huge number of options these days (of everyone I’ve known through the communities long term there are 2 people who it has ‘failed’ for – failed meaning new relapses, more lesions and active lesion activity in the brain and spine)

There is always Tysabri, Tecfidera and all those other DMT choices available.
With a forward thinking neurologist off book Cladidrabine is also an option.
Oreclizumab (or however it’s spelt) is very close to being approved now although if you’ve had Lemtrada it does prohibit you from participating in the trial.
Last but not least:
HSCT is there as a last resort if nothing else works …..

It’s a very personal choice, as a fan of lists when I made my decision I did the pro’s and con’s for all of them with my life, lifestyle, work, medical history all taken into account and I found some wonderful people to talk to who helped me understand those treatments.

If you need someone to talk to I’m happy to share contact details xxx


tessa
1 year ago

Interesting about ocrelizumab ..Prof G in the Barts blog seems to think that if it is approved form NICE for PPMS ( still not sure if SPMS is going to be included) that the cost will be prohibitive and there will be a lot of caveats around prescribing. Age being one of them he posits . Great!
Tessa


tessa
1 year ago

“For “of course not “form” predictive text and careless lack of proof reading!!


koffeelover
1 year ago

For what it’s worth, I can definitely recommend Tysabri – it has almost no side effects (Lemtrada can have quite a few, I think). PML is always a concern, but the risk is very tiny and regular blood tests are done to assess.

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