reds44 01/03/17
Last reply 10 months ago
MEDS AFTER LEMTRADA

JUST FINISHED MY 2ND ROUND, 1ST DAY I ENDED UP IN THE HOSPITAL FOR A WEEK LESION ON MY T 12 FELT LIKE I HAD NO RIGHT LEG AND COULD NOT URINATE. SO I FELL IT DID NOT WORK FOR ME. SO WHAT DMD DID YOUR GO ON AFTER YOUR ROUNDS OF LEMTRADA?? THANK YOU

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daniel2025
12 months ago

You had the Porsche 911 of ms treatment. Lemtrada is one of the best there is room for repeat courses in years 3 and 4 if your ms is still active. No ms treatments are a outright cure its intended to control relapsing as best as possible. There is always a chance existing symptoms cab remain. Yes some people may experience improvement but not everyone is going to automatically return to the way they where before getting ms there is a lot of factors at work and no two peoples ms journey is alke


imbarca
11 months ago

@reds44 if I am reading it right, you’re having a big relapse straight after your round 2? It’s possible that it started just before the treatment and the treatment wasn’t in time to stop it maybe? Or could this be an older lesion that’s been really irritated by all the inflammation from the treatment? I had a tough time after round 1 and had worse symptoms than I ever experienced in any relapse, but they got gradually better (back to pre treatment crapness not cured).

What does your neurologist think is going on?

As for what’s next, I think you might have to do a bit of wait and see? If you continue to experience relapses, then it will be pretty clear that it hasn’t worked for you and something else is needed. But what that might be will need to be a conversation with your neurologist. It depends on what you’ve tried, whether you’re eligible for clinical trials etc.

The important thing is to make sure that you’re getting monitored and that you have a proactive neurologist who won’t just shrug their shoulders. Fingers crossed for you.


caterpillar
11 months ago

There are reports of rituximab given with good results for flares after Lemtrada – but I guess it would have to be really serious flare with MRI lighting up like a Christmas tree before anybody considers it as a rescue operation. But it is an option.
Some people seem to describe flare-ups after Lemtrada that get better over time, others go through Lem treatment with no trouble.
Oh, one more thing… did you have fingolimod (Gilenya) before Lem?


reds44
11 months ago

Thank you all for your comments I am going to wait and see what happens with this and will get an MRI in Oct..


lhroxy
10 months ago

Red44 my daughter suffered a relapse 4 months after her first round of Lemtrada and required a course of steroids. On an MRI they found four new lesions and lots of inflammation. Her neurologist wants her to have stem cell treatment as she says the Lemtrada has failed. The only alternative would be tysabri.

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